HOME - RARE DISEASE UKWHAT IS A RARE DISEASEOUR WORKSUPPORTERSNEWS &

EVENTSSHOPABOUT US

We provide a united voice for the rare disease community by capturing the experiences of patients and families. We work with our supporters to raise the profile of rare diseases across the UK. We seek to bring about lasting change offering better health and quality of UK STRATEGY FOR RARE DISEASES UK STRATEGY FOR RARE DISEASES Rare Disease UK has over 3,400 registered supporters including academics, clinicians, industry, individual members and patient organisations.You can view a full list of our industry supporters here.In the UK it is estimated that 3.5 million people will be affected b

RARE REACH FESTIVAL

Rare Reach Festival STORYTELLING IS POWERFULEveryday people affected by rare conditions share their stories on social media to help raise awareness of how their lives are impacted by their condition. Some stories are sad, some are funny, some are inspirational and many are all of these things. W PATIENT EMPOWERMENT GROUP Patient Empowerment Group. Rare Disease UK’s Patient Empowerment Group (PEG) is a collective of patient representatives who volunteer their time and expertise to help monitor and progress the implementation of the UK Strategy for Rare Diseases. The Department of Health and Social Care and its arm’s-length bodies consult PEG to

ensure that

DERCUMS DISEASE AND RARE DISEASE FOUNDATION UK Dercums Disease And Rare Disease Foundation Uk. We decided to do something for Dercums Disease and the many rare diseases . It came to our attention that many close friends and acquaintances were suffering very similar ailments to Dercum’s Syndrome. This was very shocking, and after some research we have found that many people show symptoms CENTRES OF EXCELLENCE FOR Unit 4D, Leroy House 436 Essex Road London N1 3QP tel: 02077043141 fax: 02073591447 info@raredisease.org.uk www.raredisease.org.uk Rare Diseases Centres of Excellence for www.raredisease.org.uk PICKS DISEASE SUPPORT GROUP PICKS DISEASE SUPPORT GROUP - Rare Disease UK. Rare Reach Festival. What is a rare disease? Our Work. Coordination of Care. Diagnosis. Patient Empowerment. Patient Experience. UK RARE DISEASE FORUM CONFERENCE LIVING WITH A RARE CONDITION Living with a Rare Condition - Home - Rare Disease UK MY JOURNEY TO A MAST CELL ACTIVATION I used to be one of those people who live their life at 100mph. I was an excellent student, an aspiring actress, a poet, a runner, and a volunteer at my church. I believed I could and would have it all, and I relished life. Tummy Troubles It was when I was in my second year of

a law degree at Ox

HOME - RARE DISEASE UKWHAT IS A RARE DISEASEOUR WORKSUPPORTERSNEWS &

EVENTSSHOPABOUT US

We provide a united voice for the rare disease community by capturing the experiences of patients and families. We work with our supporters to raise the profile of rare diseases across the UK. We seek to bring about lasting change offering better health and quality of UK STRATEGY FOR RARE DISEASES UK STRATEGY FOR RARE DISEASES Rare Disease UK has over 3,400 registered supporters including academics, clinicians, industry, individual members and patient organisations.You can view a full list of our industry supporters here.In the UK it is estimated that 3.5 million people will be affected b

RARE REACH FESTIVAL

Rare Reach Festival STORYTELLING IS POWERFULEveryday people affected by rare conditions share their stories on social media to help raise awareness of how their lives are impacted by their condition. Some stories are sad, some are funny, some are inspirational and many are all of these things. W PATIENT EMPOWERMENT GROUP Patient Empowerment Group. Rare Disease UK’s Patient Empowerment Group (PEG) is a collective of patient representatives who volunteer their time and expertise to help monitor and progress the implementation of the UK Strategy for Rare Diseases. The Department of Health and Social Care and its arm’s-length bodies consult PEG to

ensure that

DERCUMS DISEASE AND RARE DISEASE FOUNDATION UK Dercums Disease And Rare Disease Foundation Uk. We decided to do something for Dercums Disease and the many rare diseases . It came to our attention that many close friends and acquaintances were suffering very similar ailments to Dercum’s Syndrome. This was very shocking, and after some research we have found that many people show symptoms CENTRES OF EXCELLENCE FOR Unit 4D, Leroy House 436 Essex Road London N1 3QP tel: 02077043141 fax: 02073591447 info@raredisease.org.uk www.raredisease.org.uk Rare Diseases Centres of Excellence for www.raredisease.org.uk PICKS DISEASE SUPPORT GROUP PICKS DISEASE SUPPORT GROUP - Rare Disease UK. Rare Reach Festival. What is a rare disease? Our Work. Coordination of Care. Diagnosis. Patient Empowerment. Patient Experience. UK RARE DISEASE FORUM CONFERENCE LIVING WITH A RARE CONDITION Living with a Rare Condition - Home - Rare Disease UK MY JOURNEY TO A MAST CELL ACTIVATION I used to be one of those people who live their life at 100mph. I was an excellent student, an aspiring actress, a poet, a runner, and a volunteer at my church. I believed I could and would have it all, and I relished life. Tummy Troubles It was when I was in my second year of

a law degree at Ox

UK STRATEGY FOR RARE DISEASES UK STRATEGY FOR RARE DISEASES Rare Disease UK has over 3,400 registered supporters including academics, clinicians, industry, individual members and patient organisations.You can view a full list of our industry supporters here.In the UK it is estimated that 3.5 million people will be affected b

RARE DISEASE DAY

Rare Disease Day 2021 Rare Disease Day 2021 will take place on Sunday 28 February.It is a chance to raise awareness amongst the general public and decision-makers about rare conditions and their impact on people’s lives.This year, in light of Covid-19, it will be harder than ever to ensure the v ILLUMINATING THE RARE REALITY (2019) This report, published on Rare Disease Day 2019 is a culmination of findings from Rare Disease UK and Genetic Alliance UK to evidence the experiences of those living with a rare condition. DERCUMS DISEASE AND RARE DISEASE FOUNDATION UK Dercums Disease And Rare Disease Foundation Uk. We decided to do something for Dercums Disease and the many rare diseases . It came to our attention that many close friends and acquaintances were suffering very similar ailments to Dercum’s Syndrome. This was very shocking, and after some research we have found that many people show symptoms RARE ALERT - RARE DISEASE Rare Disease UK Page 2 ABOUT RARE DISEASE UK Genetic Alliance UK is the national charity working to improve the lives of patients and families affected by all

LIPODYSTROPHY UK

Lipodystrophy Uk. Lipodystrophies are disorders of adipose tissue (fat) characterized by selective loss of fat from various parts of the body. There are several different types of lipodystrophies and the degree of fat loss may vary from very small depressed areas to near complete absence of adipose tissue. The extent of fat loss may

determine

THE RARE REALITY AN INSIGHT INTO Rare Disease UK: The Rare Reality – an insight into the patient and family experience of rare disease Rare Disease UK Page 5 Introduction In the UK, 1 in 17 people will be affected by a rare disease at some point in their life; this amounts to THE RARE DISEASE IMPLEMENTATION PLAN FOR NORTHERN IRELAND The Plan identifies a range of actions to be taken forward in Northern Ireland during the period 2015-2021 in relation to the 51 Commitments in the UK Strategy for Rare Diseases. Northern Ireland follows Wales and Scotland in detailing how they plan to address these commitments. The actions committed to by the Department of Health, Social

THE RARE REALITY

Following the publication of the UK Strategy for Rare Diseases in 2013, rare conditions are now higher up the agenda for clinicians, policymakers and the media than they have ever been. We have carried out a survey to get an up to date picture of patient experiences to see if anything has change ILLUMINATING THE RARE REALITY A rare disease is defined by the European Union as one that affects less than 5 in 10,000 of the general population. There are between

6,000 and 8,000

HOME - RARE DISEASE UKWHAT IS A RARE DISEASEOUR WORKSUPPORTERSNEWS &

EVENTSSHOPABOUT US

We provide a united voice for the rare disease community by capturing the experiences of patients and families. We work with our supporters to raise the profile of rare diseases across the UK. We seek to bring about lasting change offering better health and quality of ILLUMINATING THE RARE REALITY (2019) This report, published on Rare Disease Day 2019 is a culmination of findings from Rare Disease UK and Genetic Alliance UK to evidence the experiences of those living with a rare condition.

RARE REACH FESTIVAL

Rare Reach Festival STORYTELLING IS POWERFULEveryday people affected by rare conditions share their stories on social media to help raise awareness of how their lives are impacted by their condition. Some stories are sad, some are funny, some are CENTRES OF EXCELLENCE FOR Unit 4D, Leroy House 436 Essex Road London N1 3QP tel: 02077043141 fax: 02073591447 info@raredisease.org.uk www.raredisease.org.uk Rare Diseases Centres of Excellence for www.raredisease.org.uk MYOSITIS SUPPORT GROUP We use cookies to ensure that we give you the best experience on our website. If you continue to use this site we will assume that you are

happy with it.

HNPP UK - RARE DISEASE UK HNPP - Hereditary Neuropathy with liability to Pressure Palsies - is an inherited nerve disease which affects the peripheral motor (muscle) and sensory nerves. This website has been set up to share information and support for those who have been diagnosed with this disorder. This

page will mostl

THE RARE DISEASE IMPLEMENTATION PLAN FOR NORTHERN IRELAND The Plan identifies a range of actions to be taken forward in Northern Ireland during the period 2015-2021 in relation to the 51 Commitments in the UK Strategy for Rare Diseases. Northern Ireland follows Wales and Scotland in detailing how they plan to address these commitments. The actions committed to by the Department of Health, Social

JESSICA'S STORY

Jessica’s Story. I am Jessica, I am 30 years old, residing with my husband Wayne and cat Trevor in Hertfordshire, but originally from The Wirral in Merseyside. In my spare time, I thoroughly enjoy singing and travelling the world as much as I can. I have been recently diagnosed with a rare autoimmune disease and rare motility disorder.

FUCHSFRIENDS UK

Welcome to the website of Fuchsfriends UK a support group for those with the condition known as Fuchs’ Corneal Dystrophy. If you don't know what Fuchs' Dystrophy is, it is an eye condition affecting the cornea and causing the cells that pump impurities and fluids out of it

to die. Norm

THE RARE REALITY

Following the publication of the UK Strategy for Rare Diseases in 2013, rare conditions are now higher up the agenda for clinicians, policymakers and the media than they have ever been. We have carried out a survey to get an up to date picture of patient experiences to see if anything has change HOME - RARE DISEASE UKWHAT IS A RARE DISEASEOUR WORKSUPPORTERSNEWS &

EVENTSSHOPABOUT US

We provide a united voice for the rare disease community by capturing the experiences of patients and families. We work with our supporters to raise the profile of rare diseases across the UK. We seek to bring about lasting change offering better health and quality of ILLUMINATING THE RARE REALITY (2019) This report, published on Rare Disease Day 2019 is a culmination of findings from Rare Disease UK and Genetic Alliance UK to evidence the experiences of those living with a rare condition.

RARE REACH FESTIVAL

Rare Reach Festival STORYTELLING IS POWERFULEveryday people affected by rare conditions share their stories on social media to help raise awareness of how their lives are impacted by their condition. Some stories are sad, some are funny, some are CENTRES OF EXCELLENCE FOR Unit 4D, Leroy House 436 Essex Road London N1 3QP tel: 02077043141 fax: 02073591447 info@raredisease.org.uk www.raredisease.org.uk Rare Diseases Centres of Excellence for www.raredisease.org.uk MYOSITIS SUPPORT GROUP We use cookies to ensure that we give you the best experience on our website. If you continue to use this site we will assume that you are

happy with it.

HNPP UK - RARE DISEASE UK HNPP - Hereditary Neuropathy with liability to Pressure Palsies - is an inherited nerve disease which affects the peripheral motor (muscle) and sensory nerves. This website has been set up to share information and support for those who have been diagnosed with this disorder. This

page will mostl

THE RARE DISEASE IMPLEMENTATION PLAN FOR NORTHERN IRELAND The Plan identifies a range of actions to be taken forward in Northern Ireland during the period 2015-2021 in relation to the 51 Commitments in the UK Strategy for Rare Diseases. Northern Ireland follows Wales and Scotland in detailing how they plan to address these commitments. The actions committed to by the Department of Health, Social

JESSICA'S STORY

Jessica’s Story. I am Jessica, I am 30 years old, residing with my husband Wayne and cat Trevor in Hertfordshire, but originally from The Wirral in Merseyside. In my spare time, I thoroughly enjoy singing and travelling the world as much as I can. I have been recently diagnosed with a rare autoimmune disease and rare motility disorder.

FUCHSFRIENDS UK

Welcome to the website of Fuchsfriends UK a support group for those with the condition known as Fuchs’ Corneal Dystrophy. If you don't know what Fuchs' Dystrophy is, it is an eye condition affecting the cornea and causing the cells that pump impurities and fluids out of it

to die. Norm

THE RARE REALITY

Following the publication of the UK Strategy for Rare Diseases in 2013, rare conditions are now higher up the agenda for clinicians, policymakers and the media than they have ever been. We have carried out a survey to get an up to date picture of patient experiences to see if anything has change

RARE REACH FESTIVAL

Rare Reach Festival STORYTELLING IS POWERFULEveryday people affected by rare conditions share their stories on social media to help raise awareness of how their lives are impacted by their condition. Some stories are sad, some are funny, some are inspirational and many are all of these things. W UK STRATEGY FOR RARE DISEASES UK STRATEGY FOR RARE DISEASES Rare Disease UK has over 3,400 registered supporters including academics, clinicians, industry, individual members and patient organisations.You can view a full list of our industry supporters here.In the UK it is estimated that 3.5 million people will be affected b THE RARE DISEASE IMPLEMENTATION PLAN FOR NORTHERN IRELAND The Plan identifies a range of actions to be taken forward in Northern Ireland during the period 2015-2021 in relation to the 51 Commitments in the UK Strategy for Rare Diseases. Northern Ireland follows Wales and Scotland in detailing how they plan to address these commitments. The actions committed to by the Department of Health, Social RARE FILM FESTIVAL 2020 Rare Film Festival 2020. To celebrate Rare Disease Day, earlier this month we hosted the first film festival fully dedicated to raising awareness of rare diseases in the UK. We invited our supporters, including patient organisations, industry partners, communication agencies and individual supporters, to submit short films around the

theme of

THE RARE REALITY

Following the publication of the UK Strategy for Rare Diseases in 2013, rare conditions are now higher up the agenda for clinicians, policymakers and the media than they have ever been. We have carried out a survey to get an up to date picture of patient experiences to see if anything has change HNPP UK - RARE DISEASE UK HNPP - Hereditary Neuropathy with liability to Pressure Palsies - is an inherited nerve disease which affects the peripheral motor (muscle) and sensory nerves. This website has been set up to share information and support for those who have been diagnosed with this disorder. This

page will mostl

ORTHOSTATIC TREMOR UK SUPPORT GROUP We use cookies to ensure that we give you the best experience on our website. If you continue to use this site we will assume that you are

happy with it.

FUCHSFRIENDS UK

Welcome to the website of Fuchsfriends UK a support group for those with the condition known as Fuchs’ Corneal Dystrophy. If you don't know what Fuchs' Dystrophy is, it is an eye condition affecting the cornea and causing the cells that pump impurities and fluids out of it

to die. Norm

MY JOURNEY TO A MAST CELL ACTIVATION I used to be one of those people who live their life at 100mph. I was an excellent student, an aspiring actress, a poet, a runner, and a volunteer at my church. I believed I could and would have it all, and I relished life. Tummy Troubles It was when I was in my second year of

a law degree at Ox

HOME - RARE DISEASE UK Home - Rare Disease UK HOME - RARE DISEASE UKWHAT IS A RARE DISEASEOUR WORKSUPPORTERSNEWS &

EVENTSSHOPABOUT US

We provide a united voice for the rare disease community by capturing the experiences of patients and families. We work with our supporters to raise the profile of rare diseases across the UK. We seek to bring about lasting change offering better health and quality of UK STRATEGY FOR RARE DISEASES UK STRATEGY FOR RARE DISEASES Rare Disease UK has over 3,400 registered supporters including academics, clinicians, industry, individual members and patient organisations.You can view a full list of our industry supporters here.In the UK it is estimated that 3.5 million people will be affected b

RARE REACH FESTIVAL

Rare Reach Festival STORYTELLING IS POWERFULEveryday people affected by rare conditions share their stories on social media to help raise awareness of how their lives are impacted by their condition. Some stories are sad, some are funny, some are inspirational and many are all of these things. W PATIENT EMPOWERMENT GROUP Rare Disease UK’s Patient Empowerment Group (PEG) is a collective of patient representatives who volunteer their time and expertise to help monitor and progress the implementation of the UK Strategy for Rare Diseases.. The Department of Health and Social Care and its arm’s-length bodies consult PEG to ensure that the rare disease patient community is informed and effectively DERCUMS DISEASE AND RARE DISEASE FOUNDATION UK Dercums Disease And Rare Disease Foundation Uk. We decided to do something for Dercums Disease and the many rare diseases . It came to our attention that many close friends and acquaintances were suffering very similar ailments to Dercum’s Syndrome. This was very shocking, and after some research we have found that many people show symptoms

LIPODYSTROPHY UK

Lipodystrophy Uk. Lipodystrophies are disorders of adipose tissue (fat) characterized by selective loss of fat from various parts of the body. There are several different types of lipodystrophies and the degree of fat loss may vary from very small depressed areas to near complete absence of adipose tissue. The extent of fat loss may

determine

PICKS DISEASE SUPPORT GROUP PICKS DISEASE SUPPORT GROUP - Rare Disease UK. Rare Reach Festival. What is a rare disease? Our Work. Coordination of Care. Diagnosis. Patient Empowerment. Patient Experience. UK RARE DISEASE FORUM CONFERENCE CENTRES OF EXCELLENCE FOR Unit 4D, Leroy House 436 Essex Road London N1 3QP tel: 02077043141 fax: 02073591447 info@raredisease.org.uk www.raredisease.org.uk Rare Diseases Centres of Excellence for www.raredisease.org.uk HOME - RARE DISEASE UK Home - Rare Disease UK HOME - RARE DISEASE UKWHAT IS A RARE DISEASEOUR WORKSUPPORTERSNEWS &

EVENTSSHOPABOUT US

We provide a united voice for the rare disease community by capturing the experiences of patients and families. We work with our supporters to raise the profile of rare diseases across the UK. We seek to bring about lasting change offering better health and quality of UK STRATEGY FOR RARE DISEASES UK STRATEGY FOR RARE DISEASES Rare Disease UK has over 3,400 registered supporters including academics, clinicians, industry, individual members and patient organisations.You can view a full list of our industry supporters here.In the UK it is estimated that 3.5 million people will be affected b

RARE REACH FESTIVAL

Rare Reach Festival STORYTELLING IS POWERFULEveryday people affected by rare conditions share their stories on social media to help raise awareness of how their lives are impacted by their condition. Some stories are sad, some are funny, some are inspirational and many are all of these things. W PATIENT EMPOWERMENT GROUP Rare Disease UK’s Patient Empowerment Group (PEG) is a collective of patient representatives who volunteer their time and expertise to help monitor and progress the implementation of the UK Strategy for Rare Diseases.. The Department of Health and Social Care and its arm’s-length bodies consult PEG to ensure that the rare disease patient community is informed and effectively DERCUMS DISEASE AND RARE DISEASE FOUNDATION UK Dercums Disease And Rare Disease Foundation Uk. We decided to do something for Dercums Disease and the many rare diseases . It came to our attention that many close friends and acquaintances were suffering very similar ailments to Dercum’s Syndrome. This was very shocking, and after some research we have found that many people show symptoms

LIPODYSTROPHY UK

Lipodystrophy Uk. Lipodystrophies are disorders of adipose tissue (fat) characterized by selective loss of fat from various parts of the body. There are several different types of lipodystrophies and the degree of fat loss may vary from very small depressed areas to near complete absence of adipose tissue. The extent of fat loss may

determine

PICKS DISEASE SUPPORT GROUP PICKS DISEASE SUPPORT GROUP - Rare Disease UK. Rare Reach Festival. What is a rare disease? Our Work. Coordination of Care. Diagnosis. Patient Empowerment. Patient Experience. UK RARE DISEASE FORUM CONFERENCE CENTRES OF EXCELLENCE FOR Unit 4D, Leroy House 436 Essex Road London N1 3QP tel: 02077043141 fax: 02073591447 info@raredisease.org.uk www.raredisease.org.uk Rare Diseases Centres of Excellence for www.raredisease.org.uk HOME - RARE DISEASE UK Home - Rare Disease UK UK STRATEGY FOR RARE DISEASES UK STRATEGY FOR RARE DISEASES Rare Disease UK has over 3,400 registered supporters including academics, clinicians, industry, individual members and patient organisations.You can view a full list of our industry supporters here.In the UK it is estimated that 3.5 million people will be affected b

RARE DISEASE DAY

Rare Disease Day 2021 Rare Disease Day 2021 will take place on Sunday 28 February.It is a chance to raise awareness amongst the general public and decision-makers about rare conditions and their impact on people’s lives.This year, in light of Covid-19, it will be harder than ever to ensure the v RARE DISEASE DAY 2021: VIRTUAL PARLIAMENTARY EVENT Rare Disease Day 2021: Virtual Parliamentary Event. The meeting was opened by Nick Meade, Director of Policy at Genetic Alliance UK who welcomed guests and spoke about the extra challenges faced by the rare disease community. The pandemic has meant that NHS treatments have been cancelled or postponed, home and education support has been GOVERNANCE AND FUNDING GOVERNANCE AND FUNDING. Rare Disease UK is a campaign run by Genetic Alliance UK, a charity registered in England and Wales (no. 1114195) and in Scotland (no. SC039299). A company Limited by Guarantee (Number 05772999), Genetic Alliance UK’s Annual Report and Accounts can be

viewed here.

THE RARE REALITY AN INSIGHT INTO Rare Disease UK: The Rare Reality – an insight into the patient and family experience of rare disease Rare Disease UK Page 5 Introduction In the UK, 1 in 17 people will be affected by a rare disease at some point in their life; this amounts to HOME - RARE DISEASE UK Home - Rare Disease UK THE RARE DISEASE IMPLEMENTATION PLAN FOR NORTHERN IRELAND The Plan identifies a range of actions to be taken forward in Northern Ireland during the period 2015-2021 in relation to the 51 Commitments in the UK Strategy for Rare Diseases. Northern Ireland follows Wales and Scotland in detailing how they plan to address these commitments. The actions committed to by the Department of Health, Social

THE RARE REALITY

Following the publication of the UK Strategy for Rare Diseases in 2013, rare conditions are now higher up the agenda for clinicians, policymakers and the media than they have ever been. We have carried out a survey to get an up to date picture of patient experiences to see if anything has change ILLUMINATING THE RARE REALITY A rare disease is defined by the European Union as one that affects less than 5 in 10,000 of the general population. There are between

6,000 and 8,000

MY JOURNEY TO A MAST CELL ACTIVATION I used to be one of those people who live their life at 100mph. I was an excellent student, an aspiring actress, a poet, a runner, and a volunteer at my church. I believed I could and would have it all, and I relished life. Tummy Troubles It was when I was in my second year of

a law degree at Ox

HOME - RARE DISEASE UKWHAT IS A RARE DISEASEOUR WORKSUPPORTERSNEWS &

EVENTSSHOPABOUT US

We provide a united voice for the rare disease community by capturing the experiences of patients and families. We work with our supporters to raise the profile of rare diseases across the UK. We seek to bring about lasting change offering better health and quality of UK STRATEGY FOR RARE DISEASES UK STRATEGY FOR RARE DISEASES Rare Disease UK has over 3,400 registered supporters including academics, clinicians, industry, individual members and patient organisations.You can view a full list of our industry supporters here.In the UK it is estimated that 3.5 million people will be affected b

RARE REACH FESTIVAL

Rare Reach Festival STORYTELLING IS POWERFULEveryday people affected by rare conditions share their stories on social media to help raise awareness of how their lives are impacted by their condition. Some stories are sad, some are funny, some are inspirational and many are all of these things. W PATIENT EMPOWERMENT GROUP Rare Disease UK’s Patient Empowerment Group (PEG) is a collective of patient representatives who volunteer their time and expertise to help monitor and progress the implementation of the UK Strategy for Rare Diseases.. The Department of Health and Social Care and its arm’s-length bodies consult PEG to ensure that the rare disease patient community is informed and effectively DERCUMS DISEASE AND RARE DISEASE FOUNDATION UK Dercums Disease And Rare Disease Foundation Uk. We decided to do something for Dercums Disease and the many rare diseases . It came to our attention that many close friends and acquaintances were suffering very similar ailments to Dercum’s Syndrome. This was very shocking, and after some research we have found that many people show symptoms

LIPODYSTROPHY UK

Lipodystrophy Uk. Lipodystrophies are disorders of adipose tissue (fat) characterized by selective loss of fat from various parts of the body. There are several different types of lipodystrophies and the degree of fat loss may vary from very small depressed areas to near complete absence of adipose tissue. The extent of fat loss may

determine

PICKS DISEASE SUPPORT GROUP PICKS DISEASE SUPPORT GROUP - Rare Disease UK. Rare Reach Festival. What is a rare disease? Our Work. Coordination of Care. Diagnosis. Patient Empowerment. Patient Experience. UK RARE DISEASE FORUM CONFERENCE CENTRES OF EXCELLENCE FOR Unit 4D, Leroy House 436 Essex Road London N1 3QP tel: 02077043141 fax: 02073591447 info@raredisease.org.uk www.raredisease.org.uk Rare Diseases Centres of Excellence for www.raredisease.org.uk HOME - RARE DISEASE UK Home - Rare Disease UK HOME - RARE DISEASE UKWHAT IS A RARE DISEASEOUR WORKSUPPORTERSNEWS &

EVENTSSHOPABOUT US

We provide a united voice for the rare disease community by capturing the experiences of patients and families. We work with our supporters to raise the profile of rare diseases across the UK. We seek to bring about lasting change offering better health and quality of UK STRATEGY FOR RARE DISEASES UK STRATEGY FOR RARE DISEASES Rare Disease UK has over 3,400 registered supporters including academics, clinicians, industry, individual members and patient organisations.You can view a full list of our industry supporters here.In the UK it is estimated that 3.5 million people will be affected b

RARE REACH FESTIVAL

Rare Reach Festival STORYTELLING IS POWERFULEveryday people affected by rare conditions share their stories on social media to help raise awareness of how their lives are impacted by their condition. Some stories are sad, some are funny, some are inspirational and many are all of these things. W PATIENT EMPOWERMENT GROUP Rare Disease UK’s Patient Empowerment Group (PEG) is a collective of patient representatives who volunteer their time and expertise to help monitor and progress the implementation of the UK Strategy for Rare Diseases.. The Department of Health and Social Care and its arm’s-length bodies consult PEG to ensure that the rare disease patient community is informed and effectively DERCUMS DISEASE AND RARE DISEASE FOUNDATION UK Dercums Disease And Rare Disease Foundation Uk. We decided to do something for Dercums Disease and the many rare diseases . It came to our attention that many close friends and acquaintances were suffering very similar ailments to Dercum’s Syndrome. This was very shocking, and after some research we have found that many people show symptoms

LIPODYSTROPHY UK

Lipodystrophy Uk. Lipodystrophies are disorders of adipose tissue (fat) characterized by selective loss of fat from various parts of the body. There are several different types of lipodystrophies and the degree of fat loss may vary from very small depressed areas to near complete absence of adipose tissue. The extent of fat loss may

determine

PICKS DISEASE SUPPORT GROUP PICKS DISEASE SUPPORT GROUP - Rare Disease UK. Rare Reach Festival. What is a rare disease? Our Work. Coordination of Care. Diagnosis. Patient Empowerment. Patient Experience. UK RARE DISEASE FORUM CONFERENCE CENTRES OF EXCELLENCE FOR Unit 4D, Leroy House 436 Essex Road London N1 3QP tel: 02077043141 fax: 02073591447 info@raredisease.org.uk www.raredisease.org.uk Rare Diseases Centres of Excellence for www.raredisease.org.uk HOME - RARE DISEASE UK Home - Rare Disease UK UK STRATEGY FOR RARE DISEASES UK STRATEGY FOR RARE DISEASES Rare Disease UK has over 3,400 registered supporters including academics, clinicians, industry, individual members and patient organisations.You can view a full list of our industry supporters here.In the UK it is estimated that 3.5 million people will be affected b

RARE DISEASE DAY

Rare Disease Day 2021 Rare Disease Day 2021 will take place on Sunday 28 February.It is a chance to raise awareness amongst the general public and decision-makers about rare conditions and their impact on people’s lives.This year, in light of Covid-19, it will be harder than ever to ensure the v RARE DISEASE DAY 2021: VIRTUAL PARLIAMENTARY EVENT Rare Disease Day 2021: Virtual Parliamentary Event. The meeting was opened by Nick Meade, Director of Policy at Genetic Alliance UK who welcomed guests and spoke about the extra challenges faced by the rare disease community. The pandemic has meant that NHS treatments have been cancelled or postponed, home and education support has been GOVERNANCE AND FUNDING GOVERNANCE AND FUNDING. Rare Disease UK is a campaign run by Genetic Alliance UK, a charity registered in England and Wales (no. 1114195) and in Scotland (no. SC039299). A company Limited by Guarantee (Number 05772999), Genetic Alliance UK’s Annual Report and Accounts can be

viewed here.

THE RARE REALITY AN INSIGHT INTO Rare Disease UK: The Rare Reality – an insight into the patient and family experience of rare disease Rare Disease UK Page 5 Introduction In the UK, 1 in 17 people will be affected by a rare disease at some point in their life; this amounts to HOME - RARE DISEASE UK Home - Rare Disease UK THE RARE DISEASE IMPLEMENTATION PLAN FOR NORTHERN IRELAND The Plan identifies a range of actions to be taken forward in Northern Ireland during the period 2015-2021 in relation to the 51 Commitments in the UK Strategy for Rare Diseases. Northern Ireland follows Wales and Scotland in detailing how they plan to address these commitments. The actions committed to by the Department of Health, Social WORKING WITH DERMATOMYOSITIS Working with dermatomyositis. I’ve always been the type of person that likes to be busy. I crave work and even create work for myself. It happened to be a particularly busy period of my life when I became ill. In the months before my diagnosis, I was traveling all ILLUMINATING THE RARE REALITY A rare disease is defined by the European Union as one that affects less than 5 in 10,000 of the general population. There are between

6,000 and 8,000

MY JOURNEY TO A MAST CELL ACTIVATION I used to be one of those people who live their life at 100mph. I was an excellent student, an aspiring actress, a poet, a runner, and a volunteer at my church. I believed I could and would have it all, and I relished life. Tummy Troubles It was when I was in my second year of

a law degree at Ox

HOME - RARE DISEASE UKWHAT IS A RARE DISEASEOUR WORKSUPPORTERSNEWS &

EVENTSSHOPABOUT US

We provide a united voice for the rare disease community by capturing the experiences of patients and families. We work with our supporters to raise the profile of rare diseases across the UK. We seek to bring about lasting change offering better health and quality of UK STRATEGY FOR RARE DISEASES UK STRATEGY FOR RARE DISEASES Rare Disease UK has over 3,400 registered supporters including academics, clinicians, industry, individual members and patient organisations.You can view a full list of our industry supporters here.In the UK it is estimated that 3.5 million people will be affected b

RARE REACH FESTIVAL

Rare Reach Festival STORYTELLING IS POWERFULEveryday people affected by rare conditions share their stories on social media to help raise awareness of how their lives are impacted by their condition. Some stories are sad, some are funny, some are inspirational and many are all of these things. W PATIENT EMPOWERMENT GROUP Rare Disease UK’s Patient Empowerment Group (PEG) is a collective of patient representatives who volunteer their time and expertise to help monitor and progress the implementation of the UK Strategy for Rare Diseases.. The Department of Health and Social Care and its arm’s-length bodies consult PEG to ensure that the rare disease patient community is informed and effectively DERCUMS DISEASE AND RARE DISEASE FOUNDATION UK Dercums Disease And Rare Disease Foundation Uk. We decided to do something for Dercums Disease and the many rare diseases . It came to our attention that many close friends and acquaintances were suffering very similar ailments to Dercum’s Syndrome. This was very shocking, and after some research we have found that many people show symptoms

LIPODYSTROPHY UK

Lipodystrophy Uk. Lipodystrophies are disorders of adipose tissue (fat) characterized by selective loss of fat from various parts of the body. There are several different types of lipodystrophies and the degree of fat loss may vary from very small depressed areas to near complete absence of adipose tissue. The extent of fat loss may

determine

PICKS DISEASE SUPPORT GROUP PICKS DISEASE SUPPORT GROUP - Rare Disease UK. Rare Reach Festival. What is a rare disease? Our Work. Coordination of Care. Diagnosis. Patient Empowerment. Patient Experience. UK RARE DISEASE FORUM CONFERENCE CENTRES OF EXCELLENCE FOR Unit 4D, Leroy House 436 Essex Road London N1 3QP tel: 02077043141 fax: 02073591447 info@raredisease.org.uk www.raredisease.org.uk Rare Diseases Centres of Excellence for www.raredisease.org.uk HOME - RARE DISEASE UK Home - Rare Disease UK HOME - RARE DISEASE UKWHAT IS A RARE DISEASEOUR WORKSUPPORTERSNEWS &

EVENTSSHOPABOUT US

We provide a united voice for the rare disease community by capturing the experiences of patients and families. We work with our supporters to raise the profile of rare diseases across the UK. We seek to bring about lasting change offering better health and quality of UK STRATEGY FOR RARE DISEASES UK STRATEGY FOR RARE DISEASES Rare Disease UK has over 3,400 registered supporters including academics, clinicians, industry, individual members and patient organisations.You can view a full list of our industry supporters here.In the UK it is estimated that 3.5 million people will be affected b

RARE REACH FESTIVAL

Rare Reach Festival STORYTELLING IS POWERFULEveryday people affected by rare conditions share their stories on social media to help raise awareness of how their lives are impacted by their condition. Some stories are sad, some are funny, some are inspirational and many are all of these things. W PATIENT EMPOWERMENT GROUP Rare Disease UK’s Patient Empowerment Group (PEG) is a collective of patient representatives who volunteer their time and expertise to help monitor and progress the implementation of the UK Strategy for Rare Diseases.. The Department of Health and Social Care and its arm’s-length bodies consult PEG to ensure that the rare disease patient community is informed and effectively DERCUMS DISEASE AND RARE DISEASE FOUNDATION UK Dercums Disease And Rare Disease Foundation Uk. We decided to do something for Dercums Disease and the many rare diseases . It came to our attention that many close friends and acquaintances were suffering very similar ailments to Dercum’s Syndrome. This was very shocking, and after some research we have found that many people show symptoms

LIPODYSTROPHY UK

Lipodystrophy Uk. Lipodystrophies are disorders of adipose tissue (fat) characterized by selective loss of fat from various parts of the body. There are several different types of lipodystrophies and the degree of fat loss may vary from very small depressed areas to near complete absence of adipose tissue. The extent of fat loss may

determine

PICKS DISEASE SUPPORT GROUP PICKS DISEASE SUPPORT GROUP - Rare Disease UK. Rare Reach Festival. What is a rare disease? Our Work. Coordination of Care. Diagnosis. Patient Empowerment. Patient Experience. UK RARE DISEASE FORUM CONFERENCE CENTRES OF EXCELLENCE FOR Unit 4D, Leroy House 436 Essex Road London N1 3QP tel: 02077043141 fax: 02073591447 info@raredisease.org.uk www.raredisease.org.uk Rare Diseases Centres of Excellence for www.raredisease.org.uk HOME - RARE DISEASE UK Home - Rare Disease UK UK STRATEGY FOR RARE DISEASES UK STRATEGY FOR RARE DISEASES Rare Disease UK has over 3,400 registered supporters including academics, clinicians, industry, individual members and patient organisations.You can view a full list of our industry supporters here.In the UK it is estimated that 3.5 million people will be affected b

RARE DISEASE DAY

Rare Disease Day 2021 Rare Disease Day 2021 will take place on Sunday 28 February.It is a chance to raise awareness amongst the general public and decision-makers about rare conditions and their impact on people’s lives.This year, in light of Covid-19, it will be harder than ever to ensure the v RARE DISEASE DAY 2021: VIRTUAL PARLIAMENTARY EVENT Rare Disease Day 2021: Virtual Parliamentary Event. The meeting was opened by Nick Meade, Director of Policy at Genetic Alliance UK who welcomed guests and spoke about the extra challenges faced by the rare disease community. The pandemic has meant that NHS treatments have been cancelled or postponed, home and education support has been GOVERNANCE AND FUNDING GOVERNANCE AND FUNDING. Rare Disease UK is a campaign run by Genetic Alliance UK, a charity registered in England and Wales (no. 1114195) and in Scotland (no. SC039299). A company Limited by Guarantee (Number 05772999), Genetic Alliance UK’s Annual Report and Accounts can be

viewed here.

THE RARE REALITY AN INSIGHT INTO Rare Disease UK: The Rare Reality – an insight into the patient and family experience of rare disease Rare Disease UK Page 5 Introduction In the UK, 1 in 17 people will be affected by a rare disease at some point in their life; this amounts to HOME - RARE DISEASE UK Home - Rare Disease UK THE RARE DISEASE IMPLEMENTATION PLAN FOR NORTHERN IRELAND The Plan identifies a range of actions to be taken forward in Northern Ireland during the period 2015-2021 in relation to the 51 Commitments in the UK Strategy for Rare Diseases. Northern Ireland follows Wales and Scotland in detailing how they plan to address these commitments. The actions committed to by the Department of Health, Social WORKING WITH DERMATOMYOSITIS Working with dermatomyositis. I’ve always been the type of person that likes to be busy. I crave work and even create work for myself. It happened to be a particularly busy period of my life when I became ill. In the months before my diagnosis, I was traveling all ILLUMINATING THE RARE REALITY A rare disease is defined by the European Union as one that affects less than 5 in 10,000 of the general population. There are between

6,000 and 8,000

MY JOURNEY TO A MAST CELL ACTIVATION I used to be one of those people who live their life at 100mph. I was an excellent student, an aspiring actress, a poet, a runner, and a volunteer at my church. I believed I could and would have it all, and I relished life. Tummy Troubles It was when I was in my second year of

a law degree at Ox

HOME - RARE DISEASE UKWHAT IS A RARE DISEASEOUR WORKSUPPORTERSNEWS &

EVENTSSHOPABOUT US

We provide a united voice for the rare disease community by capturing the experiences of patients and families. We work with our supporters to raise the profile of rare diseases across the UK. We seek to bring about lasting change offering better health and quality of RARE FILM FESTIVAL 2020 Rare Film Festival 2020. To celebrate Rare Disease Day, earlier this month we hosted the first film festival fully dedicated to raising awareness of rare diseases in the UK. We invited our supporters, including patient organisations, industry partners, communication agencies and individual supporters, to submit short films around the

theme of

PATIENT EMPOWERMENT GROUP Patient Empowerment Group. Rare Disease UK’s Patient Empowerment Group (PEG) is a collective of patient representatives who volunteer their time and expertise to help monitor and progress the implementation of the UK Strategy for Rare Diseases. The Department of Health and Social Care and its arm’s-length bodies consult PEG to

ensure that

PICKS DISEASE SUPPORT GROUP PICKS DISEASE SUPPORT GROUP - Rare Disease UK. Rare Reach Festival. What is a rare disease? Our Work. Coordination of Care. Diagnosis. Patient Empowerment. Patient Experience. CENTRES OF EXCELLENCE FOR Unit 4D, Leroy House 436 Essex Road London N1 3QP tel: 02077043141 fax: 02073591447 info@raredisease.org.uk www.raredisease.org.uk Rare Diseases Centres of Excellence for www.raredisease.org.uk HOME - RARE DISEASE UK Home - Rare Disease UK THE RARE DISEASE IMPLEMENTATION PLAN FOR NORTHERN IRELAND The Plan identifies a range of actions to be taken forward in Northern Ireland during the period 2015-2021 in relation to the 51 Commitments in the UK Strategy for Rare Diseases. Northern Ireland follows Wales and Scotland in detailing how they plan to address these commitments. The actions committed to by the Department of Health, Social

FUCHSFRIENDS UK

Welcome to the website of Fuchsfriends UK a support group for those with the condition known as Fuchs’ Corneal Dystrophy. If you don't know what Fuchs' Dystrophy is, it is an eye condition affecting the cornea and causing the cells that pump impurities and fluids out of it

to die. Norm

THE RARE REALITY

Following the publication of the UK Strategy for Rare Diseases in 2013, rare conditions are now higher up the agenda for clinicians, policymakers and the media than they have ever been. We have carried out a survey to get an up to date picture of patient experiences to see if anything has change MY JOURNEY TO A MAST CELL ACTIVATION I used to be one of those people who live their life at 100mph. I was an excellent student, an aspiring actress, a poet, a runner, and a volunteer at my church. I believed I could and would have it all, and I relished life. Tummy Troubles It was when I was in my second year of

a law degree at Ox

HOME - RARE DISEASE UKWHAT IS A RARE DISEASEOUR WORKSUPPORTERSNEWS &

EVENTSSHOPABOUT US

We provide a united voice for the rare disease community by capturing the experiences of patients and families. We work with our supporters to raise the profile of rare diseases across the UK. We seek to bring about lasting change offering better health and quality of RARE FILM FESTIVAL 2020 Rare Film Festival 2020. To celebrate Rare Disease Day, earlier this month we hosted the first film festival fully dedicated to raising awareness of rare diseases in the UK. We invited our supporters, including patient organisations, industry partners, communication agencies and individual supporters, to submit short films around the

theme of

PATIENT EMPOWERMENT GROUP Patient Empowerment Group. Rare Disease UK’s Patient Empowerment Group (PEG) is a collective of patient representatives who volunteer their time and expertise to help monitor and progress the implementation of the UK Strategy for Rare Diseases. The Department of Health and Social Care and its arm’s-length bodies consult PEG to

ensure that

PICKS DISEASE SUPPORT GROUP PICKS DISEASE SUPPORT GROUP - Rare Disease UK. Rare Reach Festival. What is a rare disease? Our Work. Coordination of Care. Diagnosis. Patient Empowerment. Patient Experience. CENTRES OF EXCELLENCE FOR Unit 4D, Leroy House 436 Essex Road London N1 3QP tel: 02077043141 fax: 02073591447 info@raredisease.org.uk www.raredisease.org.uk Rare Diseases Centres of Excellence for www.raredisease.org.uk HOME - RARE DISEASE UK Home - Rare Disease UK THE RARE DISEASE IMPLEMENTATION PLAN FOR NORTHERN IRELAND The Plan identifies a range of actions to be taken forward in Northern Ireland during the period 2015-2021 in relation to the 51 Commitments in the UK Strategy for Rare Diseases. Northern Ireland follows Wales and Scotland in detailing how they plan to address these commitments. The actions committed to by the Department of Health, Social

FUCHSFRIENDS UK

Welcome to the website of Fuchsfriends UK a support group for those with the condition known as Fuchs’ Corneal Dystrophy. If you don't know what Fuchs' Dystrophy is, it is an eye condition affecting the cornea and causing the cells that pump impurities and fluids out of it

to die. Norm

THE RARE REALITY

Following the publication of the UK Strategy for Rare Diseases in 2013, rare conditions are now higher up the agenda for clinicians, policymakers and the media than they have ever been. We have carried out a survey to get an up to date picture of patient experiences to see if anything has change MY JOURNEY TO A MAST CELL ACTIVATION I used to be one of those people who live their life at 100mph. I was an excellent student, an aspiring actress, a poet, a runner, and a volunteer at my church. I believed I could and would have it all, and I relished life. Tummy Troubles It was when I was in my second year of

a law degree at Ox

RARE REACH FESTIVAL

Rare Reach Festival STORYTELLING IS POWERFULEveryday people affected by rare conditions share their stories on social media to help raise awareness of how their lives are impacted by their condition. Some stories are sad, some are funny, some are inspirational and many are all of these things. W RARE ALERT - RARE DISEASE Rare Disease UK Page 2 ABOUT RARE DISEASE UK Genetic Alliance UK is the national charity working to improve the lives of patients and families affected by all RARE FILM FESTIVAL 2020 Rare Film Festival 2020. To celebrate Rare Disease Day, earlier this month we hosted the first film festival fully dedicated to raising awareness of rare diseases in the UK. We invited our supporters, including patient organisations, industry partners, communication agencies and individual supporters, to submit short films around the

theme of

ILLUMINATING THE RARE REALITY (2019) This report, published on Rare Disease Day 2019 is a culmination of findings from Rare Disease UK and Genetic Alliance UK to evidence the experiences of those living with a rare condition. THE RARE REALITY AN INSIGHT INTO Rare Disease UK: The Rare Reality – an insight into the patient and family experience of rare disease Rare Disease UK Page 5 Introduction In the UK, 1 in 17 people will be affected by a rare disease at some point in their life; this amounts to BATTEN DISEASE FAMILY ASSOCIATION Batten Disease Family Association. Our mission is to enable everyone who is affected by Batten disease to live life to the full and to secure the care and support they need until we find a cure. The BDFA offers informed guidance and support to families and the professionals who work with them as well as actively increasing awareness of the

RARE DISEASE DAY

Become a star in the rare reality. 1 in 17 people will live with a rare disease in their lifetime, but despite the numbers, it can be an incredibly isolating experience.

THE RARE REALITY

Following the publication of the UK Strategy for Rare Diseases in 2013, rare conditions are now higher up the agenda for clinicians, policymakers and the media than they have ever been. We have carried out a survey to get an up to date picture of patient experiences to see if anything has change UK RARE DISEASE FORUM CONFERENCE On Friday 24 November we attended the UK Rare Disease Forum Conference. The purpose of the meeting, attended by a variety of patient organisations, clinicians, and civil servants, was to discuss the implementation of the UK Strategy for Rare Diseases so far, and what the UK Rare Disease Forum and the UK Rare Diseases Policy Board should focus on in the upcoming year. MY JOURNEY TO A MAST CELL ACTIVATION I used to be one of those people who live their life at 100mph. I was an excellent student, an aspiring actress, a poet, a runner, and a volunteer at my church. I believed I could and would have it all, and I relished life. Tummy Troubles It was when I was in my second year of

a law degree at Ox

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