HOME - NSPKU

If you would like to talk to someone, call our helpline on 03030401090 or send an email to info@nspku.org. Phenylketonuria (PKU) is a rare metabolic disorder. People with PKU cannot metabolise phenylalanine, an amino acid found in protein foods. Share PKU dietary updates, along with news, research and advice articles.

DOCUMENTS - NSPKU

25/06/2020. Document. The PKU Diet at School. 1 file (s) 827 downloads. Childminders, Nurseries and Schools, Children, Dietary info, Starting nursery and school. 25/06/2020. Document. Travelling with PKU (Danish Translation) 1 file (s) 14 downloads. CLINICAL CENTRES FOR PKU Temple Street. Dublin 1. Adult Metabolic ServicesMater Misericordiae University Hospital. Eccles Street. Dublin 7. D07 R2WY. Metabolic Support UK. 5 Hilliards Court, Sandpiper Way,

PKU IN ADULTS

Deborah A. Bilder, Joyce A. Kobori, Jessica L. Cohen-Pfeffer, Erin M. Johnson, Elaina R. Jurecki, Mitzie L. Grant; Neuropsychiatric comorbidities in adults with phenylketonuria: A retrospective cohort study; . 3714 individuals with PKU were identified within one of the American health insurance database, and these were compared with health insurance records from 7060 individuals with diabetes

DIETARY INFORMATION

NSPKU’s advocacy and research work has identified that many people with PKU struggle to get the specialist dietary products they need. “Patients frequently tell me that they find it difficult to obtain prescriptions for supplies of ACBS foods and protein substitutes. Their prescriptions may be cut, reduced, interrupted or continually

PKU PASSPORT

PKU Passport. Download. Download 210. File Size 1 MB. File Count 1. Create Date 04/02/2020. Last Updated 27/06/2020. LOW PROTEIN FOODS AVAILABLE ON PRESCRIPTION FOR PATIENTS Low Protein Foods available on prescription for patients with PKU. Low Protein Foods available on prescription for patients with PKU. Download. Version. Download 976. File Size 341.69 KB. File Count 1. Create Date 26/09/2020. Last Updated 21/10/2020.

BLOOD TEST ADVICE

People with PKU need to monitor levels of phenylalanine in their blood. This is usually done by patients or carers taking blood spot samples. Taking good blood spots can be tricky, you can read our guidance on taking a blood spot here.. Or for our more information visit our Documents Library PKU EXCHANGE READY RECKONER PKU exchange ready reckoner. Download. Download 482. File Size 92.98 KB. File Count 1. Create Date 04/02/2020. Last Updated 25/06/2020. NEW GUIDE TO PKU FOOD EXCHANGES This useful picture guide to PKU food exchanges has been compiled by Birmingham Children’s Hospital. Click here: https://www.nspku.org/download/food-exchanges-list

HOME - NSPKU

If you would like to talk to someone, call our helpline on 03030401090 or send an email to info@nspku.org. Phenylketonuria (PKU) is a rare metabolic disorder. People with PKU cannot metabolise phenylalanine, an amino acid found in protein foods. Share PKU dietary updates, along with news, research and advice articles.

DOCUMENTS - NSPKU

25/06/2020. Document. The PKU Diet at School. 1 file (s) 827 downloads. Childminders, Nurseries and Schools, Children, Dietary info, Starting nursery and school. 25/06/2020. Document. Travelling with PKU (Danish Translation) 1 file (s) 14 downloads. CLINICAL CENTRES FOR PKU Temple Street. Dublin 1. Adult Metabolic ServicesMater Misericordiae University Hospital. Eccles Street. Dublin 7. D07 R2WY. Metabolic Support UK. 5 Hilliards Court, Sandpiper Way,

PKU IN ADULTS

Deborah A. Bilder, Joyce A. Kobori, Jessica L. Cohen-Pfeffer, Erin M. Johnson, Elaina R. Jurecki, Mitzie L. Grant; Neuropsychiatric comorbidities in adults with phenylketonuria: A retrospective cohort study; . 3714 individuals with PKU were identified within one of the American health insurance database, and these were compared with health insurance records from 7060 individuals with diabetes

DIETARY INFORMATION

NSPKU’s advocacy and research work has identified that many people with PKU struggle to get the specialist dietary products they need. “Patients frequently tell me that they find it difficult to obtain prescriptions for supplies of ACBS foods and protein substitutes. Their prescriptions may be cut, reduced, interrupted or continually

PKU PASSPORT

PKU Passport. Download. Download 210. File Size 1 MB. File Count 1. Create Date 04/02/2020. Last Updated 27/06/2020. LOW PROTEIN FOODS AVAILABLE ON PRESCRIPTION FOR PATIENTS Low Protein Foods available on prescription for patients with PKU. Low Protein Foods available on prescription for patients with PKU. Download. Version. Download 976. File Size 341.69 KB. File Count 1. Create Date 26/09/2020. Last Updated 21/10/2020.

BLOOD TEST ADVICE

People with PKU need to monitor levels of phenylalanine in their blood. This is usually done by patients or carers taking blood spot samples. Taking good blood spots can be tricky, you can read our guidance on taking a blood spot here.. Or for our more information visit our Documents Library PKU EXCHANGE READY RECKONER PKU exchange ready reckoner. Download. Download 482. File Size 92.98 KB. File Count 1. Create Date 04/02/2020. Last Updated 25/06/2020. NEW GUIDE TO PKU FOOD EXCHANGES This useful picture guide to PKU food exchanges has been compiled by Birmingham Children’s Hospital. Click here: https://www.nspku.org/download/food-exchanges-list

ABOUT PKU - NSPKU

About PKU. Phenylketonuria (PKU) is a rare metabolic disorder. People with PKU cannot metabolise phenylalanine, an amino acid found in protein foods. This builds up to levels that are toxic to the brain. PKU is diagnosed by the “heel prick” new-born screening test. PKU is a treatable condition.

PKU IN ADULTS

Deborah A. Bilder, Joyce A. Kobori, Jessica L. Cohen-Pfeffer, Erin M. Johnson, Elaina R. Jurecki, Mitzie L. Grant; Neuropsychiatric comorbidities in adults with phenylketonuria: A retrospective cohort study; . 3714 individuals with PKU were identified within one of the American health insurance database, and these were compared with health insurance records from 7060 individuals with diabetes

LIVING WITH PKU

The NHS, local authorities and all schools in England, Scotland, Wales and Northern Ireland all have duties towards children with medical conditions, including PKU. Schools are required to make adjustments so that children with PKU should be able to take part in all aspects of school life. If your child’s school or nursery is not adequately

OUR TEAM - NSPKU

Gemma Hack. Gemma is a Paediatric Metabolic Nurse Specialist at Evelina London Children’s Hospital. She supports inpatients and outpatients with metabolic conditions including those diagnosed with PKU through newborn screening. Gemma has a keen interest in PKU and the transition of the young people into Adult Metabolic services.

LATE DIAGNOSED PKU

Late Diagnosed PKU. Download. Download 46. File Size 196 KB. File Count 1. Create Date 04/02/2020. Last Updated 25/06/2020. ICE LOLLIES, ICE CREAMS, SORBETS (PKU) 2021 Ice Lollies, Ice Creams, Sorbets (PKU) 2021. A photobook guide to low protein Ice Lollies, ice creams and sorbets suitable in the PKU diet is downloadable here. This book is kindly provided by the Birmingham Children's Hospital Metabolic Dietitians team - thank you! Tweet.

Follow us.

SUPPORTING CARERS OF CHILDREN AND ADULTS WITH PKU Carers of children with PKU can apply for Disability Living Allowance which is a tax free benefit. People over the age of 16 may be able to apply for the Personal Independence Payment. In some instances, Carers Allowance may be payable. Carers of children and adults with health conditions can have additional rights in the workplace. NEW GUIDE TO PKU FOOD EXCHANGES This useful picture guide to PKU food exchanges has been compiled by Birmingham Children’s Hospital. Click here: https://www.nspku.org/download/food-exchanges-list

LOW PROTEIN SNACKS

Low Protein Snacks. Download. Download 94. File Size 14.78 MB. File Count 1. Create Date 16/04/2021. Last Updated 16/04/2021. CAMPAIGNING FOR PKU IN WALES Campaigning for PKU in Wales. As a small patient community and a small charity we have to try and make sure our voice is heard in all parts of the UK. We have always managed to get support from very active and vocal MPs. Christina Rees MP, Shadow Secretary of State for Wales, has always been very sympathetic to her constituents with PKU and was

HOME - NSPKU

If you would like to talk to someone, call our helpline on 03030401090 or send an email to info@nspku.org. Phenylketonuria (PKU) is a rare metabolic disorder. People with PKU cannot metabolise phenylalanine, an amino acid found in protein foods. Share PKU dietary updates, along with news, research and advice articles.

DOCUMENTS - NSPKU

25/06/2020. Document. The PKU Diet at School. 1 file (s) 827 downloads. Childminders, Nurseries and Schools, Children, Dietary info, Starting nursery and school. 25/06/2020. Document. Travelling with PKU (Danish Translation) 1 file (s) 14 downloads. CLINICAL CENTRES FOR PKU Temple Street. Dublin 1. Adult Metabolic ServicesMater Misericordiae University Hospital. Eccles Street. Dublin 7. D07 R2WY. Metabolic Support UK. 5 Hilliards Court, Sandpiper Way,

ABOUT PKU - NSPKU

About PKU. Phenylketonuria (PKU) is a rare metabolic disorder. People with PKU cannot metabolise phenylalanine, an amino acid found in protein foods. This builds up to levels that are toxic to the brain. PKU is diagnosed by the “heel prick” new-born screening test. PKU is a treatable condition.

PKU IN ADULTS

Deborah A. Bilder, Joyce A. Kobori, Jessica L. Cohen-Pfeffer, Erin M. Johnson, Elaina R. Jurecki, Mitzie L. Grant; Neuropsychiatric comorbidities in adults with phenylketonuria: A retrospective cohort study; . 3714 individuals with PKU were identified within one of the American health insurance database, and these were compared with health insurance records from 7060 individuals with diabetes

DIETARY INFORMATION

NSPKU’s advocacy and research work has identified that many people with PKU struggle to get the specialist dietary products they need. “Patients frequently tell me that they find it difficult to obtain prescriptions for supplies of ACBS foods and protein substitutes. Their prescriptions may be cut, reduced, interrupted or continually LOW PROTEIN FOODS AVAILABLE ON PRESCRIPTION FOR PATIENTS Low Protein Foods available on prescription for patients with PKU. Low Protein Foods available on prescription for patients with PKU. Download. Version. Download 976. File Size 341.69 KB. File Count 1. Create Date 26/09/2020. Last Updated 21/10/2020.

PKU PASSPORT

PKU Passport. Download. Download 210. File Size 1 MB. File Count 1. Create Date 04/02/2020. Last Updated 27/06/2020.

BLOOD TEST ADVICE

People with PKU need to monitor levels of phenylalanine in their blood. This is usually done by patients or carers taking blood spot samples. Taking good blood spots can be tricky, you can read our guidance on taking a blood spot here.. Or for our more information visit our Documents Library PKU EXCHANGE READY RECKONER PKU exchange ready reckoner. Download. Download 482. File Size 92.98 KB. File Count 1. Create Date 04/02/2020. Last Updated 25/06/2020.

HOME - NSPKU

If you would like to talk to someone, call our helpline on 03030401090 or send an email to info@nspku.org. Phenylketonuria (PKU) is a rare metabolic disorder. People with PKU cannot metabolise phenylalanine, an amino acid found in protein foods. Share PKU dietary updates, along with news, research and advice articles.

DOCUMENTS - NSPKU

25/06/2020. Document. The PKU Diet at School. 1 file (s) 827 downloads. Childminders, Nurseries and Schools, Children, Dietary info, Starting nursery and school. 25/06/2020. Document. Travelling with PKU (Danish Translation) 1 file (s) 14 downloads. CLINICAL CENTRES FOR PKU Temple Street. Dublin 1. Adult Metabolic ServicesMater Misericordiae University Hospital. Eccles Street. Dublin 7. D07 R2WY. Metabolic Support UK. 5 Hilliards Court, Sandpiper Way,

ABOUT PKU - NSPKU

About PKU. Phenylketonuria (PKU) is a rare metabolic disorder. People with PKU cannot metabolise phenylalanine, an amino acid found in protein foods. This builds up to levels that are toxic to the brain. PKU is diagnosed by the “heel prick” new-born screening test. PKU is a treatable condition.

PKU IN ADULTS

Deborah A. Bilder, Joyce A. Kobori, Jessica L. Cohen-Pfeffer, Erin M. Johnson, Elaina R. Jurecki, Mitzie L. Grant; Neuropsychiatric comorbidities in adults with phenylketonuria: A retrospective cohort study; . 3714 individuals with PKU were identified within one of the American health insurance database, and these were compared with health insurance records from 7060 individuals with diabetes

DIETARY INFORMATION

NSPKU’s advocacy and research work has identified that many people with PKU struggle to get the specialist dietary products they need. “Patients frequently tell me that they find it difficult to obtain prescriptions for supplies of ACBS foods and protein substitutes. Their prescriptions may be cut, reduced, interrupted or continually LOW PROTEIN FOODS AVAILABLE ON PRESCRIPTION FOR PATIENTS Low Protein Foods available on prescription for patients with PKU. Low Protein Foods available on prescription for patients with PKU. Download. Version. Download 976. File Size 341.69 KB. File Count 1. Create Date 26/09/2020. Last Updated 21/10/2020.

PKU PASSPORT

PKU Passport. Download. Download 210. File Size 1 MB. File Count 1. Create Date 04/02/2020. Last Updated 27/06/2020.

BLOOD TEST ADVICE

People with PKU need to monitor levels of phenylalanine in their blood. This is usually done by patients or carers taking blood spot samples. Taking good blood spots can be tricky, you can read our guidance on taking a blood spot here.. Or for our more information visit our Documents Library PKU EXCHANGE READY RECKONER PKU exchange ready reckoner. Download. Download 482. File Size 92.98 KB. File Count 1. Create Date 04/02/2020. Last Updated 25/06/2020.

ABOUT PKU - NSPKU

About PKU. Phenylketonuria (PKU) is a rare metabolic disorder. People with PKU cannot metabolise phenylalanine, an amino acid found in protein foods. This builds up to levels that are toxic to the brain. PKU is diagnosed by the “heel prick” new-born screening test. PKU is a treatable condition. NSPKU GUIDANCE RE CORONAVIRUS (COVID-19) NSPKU helpline – 030 3040 1090. Email – info@nspku.org or suzanne.ford@nspku.org. And on twitter – @nspku. The NSPKU has produced a letter to supermarkets which explains that people with PKU should have access to the supermarket during the times set aside for

vulnerable people.

GUIDELINES - NSPKU

The guidelines include 70 statements about PKU care based on available evidence and almost 500 scientific publications have been covered. They discuss every aspect of PKU care, including pregnancy and use of sapropterin (BH4). The guidelines are intended to be used by metabolic physicians, dietitians, obstetricians, midwives, psychologists

PKU PASSPORT

PKU Passport. Download. Download 210. File Size 1 MB. File Count 1. Create Date 04/02/2020. Last Updated 27/06/2020.

LIVING WITH PKU

The NHS, local authorities and all schools in England, Scotland, Wales and Northern Ireland all have duties towards children with medical conditions, including PKU. Schools are required to make adjustments so that children with PKU should be able to take part in all aspects of school life. If your child’s school or nursery is not adequately SUPPORTING CARERS OF CHILDREN AND ADULTS WITH PKU Carers of children with PKU can apply for Disability Living Allowance which is a tax free benefit. People over the age of 16 may be able to apply for the Personal Independence Payment. In some instances, Carers Allowance may be payable. Carers of children and adults with health conditions can have additional rights in the workplace. ICE LOLLIES, ICE CREAMS, SORBETS (PKU) 2021 Ice Lollies, Ice Creams, Sorbets (PKU) 2021. A photobook guide to low protein Ice Lollies, ice creams and sorbets suitable in the PKU diet is downloadable here. This book is kindly provided by the Birmingham Children's Hospital Metabolic Dietitians team - thank you! Tweet.

Follow us.

LATE DIAGNOSED PKU

Late Diagnosed PKU. Download. Download 46. File Size 196 KB. File Count 1. Create Date 04/02/2020. Last Updated 25/06/2020. PKU EXCHANGE READY RECKONER PKU exchange ready reckoner. Download. Download 482. File Size 92.98 KB. File Count 1. Create Date 04/02/2020. Last Updated 25/06/2020.

LOW PROTEIN SNACKS

Low Protein Snacks. Download. Download 94. File Size 14.78 MB. File Count 1. Create Date 16/04/2021. Last Updated 16/04/2021.

HOME - NSPKU

If you would like to talk to someone, call our helpline on 03030401090 or send an email to info@nspku.org. Phenylketonuria (PKU) is a rare metabolic disorder. People with PKU cannot metabolise phenylalanine, an amino acid found in protein foods. Share PKU dietary updates, along with news, research and advice articles. CLINICAL CENTRES FOR PKU Temple Street. Dublin 1. Adult Metabolic ServicesMater Misericordiae University Hospital. Eccles Street. Dublin 7. D07 R2WY. Metabolic Support UK. 5 Hilliards Court, Sandpiper Way,

DOCUMENTS - NSPKU

25/06/2020. Document. The PKU Diet at School. 1 file (s) 827 downloads. Childminders, Nurseries and Schools, Children, Dietary info, Starting nursery and school. 25/06/2020. Document. Travelling with PKU (Danish Translation) 1 file (s) 14 downloads.

DIETARY INFORMATION

NSPKU’s advocacy and research work has identified that many people with PKU struggle to get the specialist dietary products they need. “Patients frequently tell me that they find it difficult to obtain prescriptions for supplies of ACBS foods and protein substitutes. Their prescriptions may be cut, reduced, interrupted or continually

PKU PASSPORT

PKU Passport. Download. Download 210. File Size 1 MB. File Count 1. Create Date 04/02/2020. Last Updated 27/06/2020. LOW PROTEIN FOODS AVAILABLE ON PRESCRIPTION FOR PATIENTS Low Protein Foods available on prescription for patients with PKU. Low Protein Foods available on prescription for patients with PKU. Download. Version. Download 976. File Size 341.69 KB. File Count 1. Create Date 26/09/2020. Last Updated 21/10/2020. SUPPORTING CARERS OF CHILDREN AND ADULTS WITH PKU Carers of children with PKU can apply for Disability Living Allowance which is a tax free benefit. People over the age of 16 may be able to apply for the Personal Independence Payment. In some instances, Carers Allowance may be payable. Carers of children and adults with health conditions can have additional rights in the workplace.

BLOOD TEST ADVICE

People with PKU need to monitor levels of phenylalanine in their blood. This is usually done by patients or carers taking blood spot samples. Taking good blood spots can be tricky, you can read our guidance on taking a blood spot here.. Or for our more information visit our Documents Library PKU EXCHANGE READY RECKONER PKU exchange ready reckoner. Download. Download 482. File Size 92.98 KB. File Count 1. Create Date 04/02/2020. Last Updated 25/06/2020. CAMPAIGNING FOR PKU IN WALES Campaigning for PKU in Wales. As a small patient community and a small charity we have to try and make sure our voice is heard in all parts of the UK. We have always managed to get support from very active and vocal MPs. Christina Rees MP, Shadow Secretary of State for Wales, has always been very sympathetic to her constituents with PKU and was

HOME - NSPKU

If you would like to talk to someone, call our helpline on 03030401090 or send an email to info@nspku.org. Phenylketonuria (PKU) is a rare metabolic disorder. People with PKU cannot metabolise phenylalanine, an amino acid found in protein foods. Share PKU dietary updates, along with news, research and advice articles. CLINICAL CENTRES FOR PKU Temple Street. Dublin 1. Adult Metabolic ServicesMater Misericordiae University Hospital. Eccles Street. Dublin 7. D07 R2WY. Metabolic Support UK. 5 Hilliards Court, Sandpiper Way,

DOCUMENTS - NSPKU

25/06/2020. Document. The PKU Diet at School. 1 file (s) 827 downloads. Childminders, Nurseries and Schools, Children, Dietary info, Starting nursery and school. 25/06/2020. Document. Travelling with PKU (Danish Translation) 1 file (s) 14 downloads.

DIETARY INFORMATION

NSPKU’s advocacy and research work has identified that many people with PKU struggle to get the specialist dietary products they need. “Patients frequently tell me that they find it difficult to obtain prescriptions for supplies of ACBS foods and protein substitutes. Their prescriptions may be cut, reduced, interrupted or continually

PKU PASSPORT

PKU Passport. Download. Download 210. File Size 1 MB. File Count 1. Create Date 04/02/2020. Last Updated 27/06/2020. LOW PROTEIN FOODS AVAILABLE ON PRESCRIPTION FOR PATIENTS Low Protein Foods available on prescription for patients with PKU. Low Protein Foods available on prescription for patients with PKU. Download. Version. Download 976. File Size 341.69 KB. File Count 1. Create Date 26/09/2020. Last Updated 21/10/2020. SUPPORTING CARERS OF CHILDREN AND ADULTS WITH PKU Carers of children with PKU can apply for Disability Living Allowance which is a tax free benefit. People over the age of 16 may be able to apply for the Personal Independence Payment. In some instances, Carers Allowance may be payable. Carers of children and adults with health conditions can have additional rights in the workplace.

BLOOD TEST ADVICE

People with PKU need to monitor levels of phenylalanine in their blood. This is usually done by patients or carers taking blood spot samples. Taking good blood spots can be tricky, you can read our guidance on taking a blood spot here.. Or for our more information visit our Documents Library PKU EXCHANGE READY RECKONER PKU exchange ready reckoner. Download. Download 482. File Size 92.98 KB. File Count 1. Create Date 04/02/2020. Last Updated 25/06/2020. CAMPAIGNING FOR PKU IN WALES Campaigning for PKU in Wales. As a small patient community and a small charity we have to try and make sure our voice is heard in all parts of the UK. We have always managed to get support from very active and vocal MPs. Christina Rees MP, Shadow Secretary of State for Wales, has always been very sympathetic to her constituents with PKU and was INTERNATIONAL PKU DAY We have 3 competitions running for International PKU Day 2021 Please see photos for detail and the closing date for entries is midnight on Saturday 19th June 2021 – to submit your entries send to info@nspku.org or if you are a twitter user, send to Anita MacDonald

via Twitter.

ABOUT PKU - NSPKU

About PKU. Phenylketonuria (PKU) is a rare metabolic disorder. People with PKU cannot metabolise phenylalanine, an amino acid found in protein foods. This builds up to levels that are toxic to the brain. PKU is diagnosed by the “heel prick” new-born screening test. PKU is a treatable condition.

PKU IN ADULTS

Deborah A. Bilder, Joyce A. Kobori, Jessica L. Cohen-Pfeffer, Erin M. Johnson, Elaina R. Jurecki, Mitzie L. Grant; Neuropsychiatric comorbidities in adults with phenylketonuria: A retrospective cohort study; . 3714 individuals with PKU were identified within one of the American health insurance database, and these were compared with health insurance records from 7060 individuals with diabetes

OUR TEAM - NSPKU

Gemma Hack. Gemma is a Paediatric Metabolic Nurse Specialist at Evelina London Children’s Hospital. She supports inpatients and outpatients with metabolic conditions including those diagnosed with PKU through newborn screening. Gemma has a keen interest in PKU and the transition of the young people into Adult Metabolic services. SUPPORTING CARERS OF CHILDREN AND ADULTS WITH PKU Carers of children with PKU can apply for Disability Living Allowance which is a tax free benefit. People over the age of 16 may be able to apply for the Personal Independence Payment. In some instances, Carers Allowance may be payable. Carers of children and adults with health conditions can have additional rights in the workplace.

LATE DIAGNOSED PKU

Late Diagnosed PKU. Download. Download 46. File Size 196 KB. File Count 1. Create Date 04/02/2020. Last Updated 25/06/2020. ICE LOLLIES, ICE CREAMS, SORBETS (PKU) 2021 Ice Lollies, Ice Creams, Sorbets (PKU) 2021. A photobook guide to low protein Ice Lollies, ice creams and sorbets suitable in the PKU diet is downloadable here. This book is kindly provided by the Birmingham Children's Hospital Metabolic Dietitians team - thank you! Tweet.

Follow us.

NEW GUIDE TO PKU FOOD EXCHANGES This useful picture guide to PKU food exchanges has been compiled by Birmingham Children’s Hospital. Click here: https://www.nspku.org/download/food-exchanges-list

LOW PROTEIN SNACKS

Low Protein Snacks. Download. Download 94. File Size 14.78 MB. File Count 1. Create Date 16/04/2021. Last Updated 16/04/2021. RAINBOW EDITION OF NEWS & VIEWS: FREE TO DOWNLOAD Rainbow Edition of News & Views: Free to Download. News and Views number 163 is a special Rainbow edition produced as an e-magazine in Spring 2020 for all NSPKU members. It is here to download for anyone, free of charge and we hope you find it

HOME - NSPKU

If you would like to talk to someone, call our helpline on 03030401090 or send an email to info@nspku.org. Phenylketonuria (PKU) is a rare metabolic disorder. People with PKU cannot metabolise phenylalanine, an amino acid found in protein foods. Share PKU dietary updates, along with news, research and advice articles. CLINICAL CENTRES FOR PKU Temple Street. Dublin 1. Adult Metabolic ServicesMater Misericordiae University Hospital. Eccles Street. Dublin 7. D07 R2WY. Metabolic Support UK. 5 Hilliards Court, Sandpiper Way,

DOCUMENTS - NSPKU

25/06/2020. Document. The PKU Diet at School. 1 file (s) 827 downloads. Childminders, Nurseries and Schools, Children, Dietary info, Starting nursery and school. 25/06/2020. Document. Travelling with PKU (Danish Translation) 1 file (s) 14 downloads.

DIETARY INFORMATION

NSPKU’s advocacy and research work has identified that many people with PKU struggle to get the specialist dietary products they need. “Patients frequently tell me that they find it difficult to obtain prescriptions for supplies of ACBS foods and protein substitutes. Their prescriptions may be cut, reduced, interrupted or continually

PKU PASSPORT

PKU Passport. Download. Download 210. File Size 1 MB. File Count 1. Create Date 04/02/2020. Last Updated 27/06/2020. LOW PROTEIN FOODS AVAILABLE ON PRESCRIPTION FOR PATIENTS Low Protein Foods available on prescription for patients with PKU. Low Protein Foods available on prescription for patients with PKU. Download. Version. Download 976. File Size 341.69 KB. File Count 1. Create Date 26/09/2020. Last Updated 21/10/2020. SUPPORTING CARERS OF CHILDREN AND ADULTS WITH PKU Carers of children with PKU can apply for Disability Living Allowance which is a tax free benefit. People over the age of 16 may be able to apply for the Personal Independence Payment. In some instances, Carers Allowance may be payable. Carers of children and adults with health conditions can have additional rights in the workplace.

BLOOD TEST ADVICE

People with PKU need to monitor levels of phenylalanine in their blood. This is usually done by patients or carers taking blood spot samples. Taking good blood spots can be tricky, you can read our guidance on taking a blood spot here.. Or for our more information visit our Documents Library PKU EXCHANGE READY RECKONER PKU exchange ready reckoner. Download. Download 482. File Size 92.98 KB. File Count 1. Create Date 04/02/2020. Last Updated 25/06/2020. CAMPAIGNING FOR PKU IN WALES Campaigning for PKU in Wales. As a small patient community and a small charity we have to try and make sure our voice is heard in all parts of the UK. We have always managed to get support from very active and vocal MPs. Christina Rees MP, Shadow Secretary of State for Wales, has always been very sympathetic to her constituents with PKU and was

HOME - NSPKU

If you would like to talk to someone, call our helpline on 03030401090 or send an email to info@nspku.org. Phenylketonuria (PKU) is a rare metabolic disorder. People with PKU cannot metabolise phenylalanine, an amino acid found in protein foods. Share PKU dietary updates, along with news, research and advice articles. CLINICAL CENTRES FOR PKU Temple Street. Dublin 1. Adult Metabolic ServicesMater Misericordiae University Hospital. Eccles Street. Dublin 7. D07 R2WY. Metabolic Support UK. 5 Hilliards Court, Sandpiper Way,

DOCUMENTS - NSPKU

25/06/2020. Document. The PKU Diet at School. 1 file (s) 827 downloads. Childminders, Nurseries and Schools, Children, Dietary info, Starting nursery and school. 25/06/2020. Document. Travelling with PKU (Danish Translation) 1 file (s) 14 downloads.

DIETARY INFORMATION

NSPKU’s advocacy and research work has identified that many people with PKU struggle to get the specialist dietary products they need. “Patients frequently tell me that they find it difficult to obtain prescriptions for supplies of ACBS foods and protein substitutes. Their prescriptions may be cut, reduced, interrupted or continually

PKU PASSPORT

PKU Passport. Download. Download 210. File Size 1 MB. File Count 1. Create Date 04/02/2020. Last Updated 27/06/2020. LOW PROTEIN FOODS AVAILABLE ON PRESCRIPTION FOR PATIENTS Low Protein Foods available on prescription for patients with PKU. Low Protein Foods available on prescription for patients with PKU. Download. Version. Download 976. File Size 341.69 KB. File Count 1. Create Date 26/09/2020. Last Updated 21/10/2020. SUPPORTING CARERS OF CHILDREN AND ADULTS WITH PKU Carers of children with PKU can apply for Disability Living Allowance which is a tax free benefit. People over the age of 16 may be able to apply for the Personal Independence Payment. In some instances, Carers Allowance may be payable. Carers of children and adults with health conditions can have additional rights in the workplace.

BLOOD TEST ADVICE

People with PKU need to monitor levels of phenylalanine in their blood. This is usually done by patients or carers taking blood spot samples. Taking good blood spots can be tricky, you can read our guidance on taking a blood spot here.. Or for our more information visit our Documents Library PKU EXCHANGE READY RECKONER PKU exchange ready reckoner. Download. Download 482. File Size 92.98 KB. File Count 1. Create Date 04/02/2020. Last Updated 25/06/2020. CAMPAIGNING FOR PKU IN WALES Campaigning for PKU in Wales. As a small patient community and a small charity we have to try and make sure our voice is heard in all parts of the UK. We have always managed to get support from very active and vocal MPs. Christina Rees MP, Shadow Secretary of State for Wales, has always been very sympathetic to her constituents with PKU and was INTERNATIONAL PKU DAY We have 3 competitions running for International PKU Day 2021 Please see photos for detail and the closing date for entries is midnight on Saturday 19th June 2021 – to submit your entries send to info@nspku.org or if you are a twitter user, send to Anita MacDonald

via Twitter.

ABOUT PKU - NSPKU

About PKU. Phenylketonuria (PKU) is a rare metabolic disorder. People with PKU cannot metabolise phenylalanine, an amino acid found in protein foods. This builds up to levels that are toxic to the brain. PKU is diagnosed by the “heel prick” new-born screening test. PKU is a treatable condition.

PKU IN ADULTS

Deborah A. Bilder, Joyce A. Kobori, Jessica L. Cohen-Pfeffer, Erin M. Johnson, Elaina R. Jurecki, Mitzie L. Grant; Neuropsychiatric comorbidities in adults with phenylketonuria: A retrospective cohort study; . 3714 individuals with PKU were identified within one of the American health insurance database, and these were compared with health insurance records from 7060 individuals with diabetes

OUR TEAM - NSPKU

Gemma Hack. Gemma is a Paediatric Metabolic Nurse Specialist at Evelina London Children’s Hospital. She supports inpatients and outpatients with metabolic conditions including those diagnosed with PKU through newborn screening. Gemma has a keen interest in PKU and the transition of the young people into Adult Metabolic services. SUPPORTING CARERS OF CHILDREN AND ADULTS WITH PKU Carers of children with PKU can apply for Disability Living Allowance which is a tax free benefit. People over the age of 16 may be able to apply for the Personal Independence Payment. In some instances, Carers Allowance may be payable. Carers of children and adults with health conditions can have additional rights in the workplace.

LATE DIAGNOSED PKU

Late Diagnosed PKU. Download. Download 46. File Size 196 KB. File Count 1. Create Date 04/02/2020. Last Updated 25/06/2020. ICE LOLLIES, ICE CREAMS, SORBETS (PKU) 2021 Ice Lollies, Ice Creams, Sorbets (PKU) 2021. A photobook guide to low protein Ice Lollies, ice creams and sorbets suitable in the PKU diet is downloadable here. This book is kindly provided by the Birmingham Children's Hospital Metabolic Dietitians team - thank you! Tweet.

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NEW GUIDE TO PKU FOOD EXCHANGES This useful picture guide to PKU food exchanges has been compiled by Birmingham Children’s Hospital. Click here: https://www.nspku.org/download/food-exchanges-list

LOW PROTEIN SNACKS

Low Protein Snacks. Download. Download 94. File Size 14.78 MB. File Count 1. Create Date 16/04/2021. Last Updated 16/04/2021. PLANT BASED MILKS, YOGHURTS AND DESSERTS Plant based milks, yoghurts and desserts. Document. Download 1357. File Size 8.79 MB. File Count 1. Create Date 26/05/2020.

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NSPKU IS THE ONLY UK CHARITY DEDICATED TO IMPROVING THE LIVES OF PEOPLE LIVING WITH THE RARE CONDITION PKU.

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WE SUPPORT ACTIVITIES AND EVENTS FOR CHILDREN AND ADULTS WITH PKU.

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NSPKU RELIES ON FUNDRAISERS TO SUPPORT THE WORK WE DO. THE NATIONAL SOCIETY FOR PHENYLKETONURIA (NSPKU) WAS FOUNDED IN 1973 AS THE NATIONAL CHARITY FOR PEOPLE LIVING WITH THE RARE METABOLIC CONDITION PHENYLKETONURIA (PKU).  LEARN MORE ABOUT WHAT WE DO AND HOW YOU CAN SUPPORT OUR WORK. Find out more about NSPKU

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NEW DIAGNOSIS?

WE HAVE INFORMATION FOR PARENTS AND FAMILIES WHO HAVE RECEIVED A NEW DIAGNOSIS OF PKU FOR THEIR BABY. If you would like to talk to someone, call our helpline on 03030401090 or send an email to info@nspku.org Find out more about a new diagnosis here Phenylketonuria (PKU) is a rare metabolic disorder. People with PKU cannot metabolise phenylalanine, an amino acid found in protein foods.

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In 2016 we launched our Call for Action campaign to improve the lives of people living with PKU. More about Campaigning SURVEY: SUPPORT FOR CHILDREN WITH PKU REGISTER TO WATCH THE NEXT NICE COMMITTEE MEETING FOR KUVAN QUESTIONS AND ANSWERS ABOUT THE NICE DECISION ABOUT KUVAN NSPKU SURVEY FOR CHILDREN WITH PKU AGED 18 OR UNDER (FOR CARER/PARENT

TO COMPLETE)

NSPKU SURVEY FOR PEOPLE WITH PKU AGED OVER 18 SHEILA – UNLOCKING THE TREATMENT FOR PKU – ORDERS OUTSIDE THE UK BOOK LAUNCH! SHEILA – UNLOCKING THE TREATMENT FOR PKU – UK ORDERS FOOD LABELLING SURVEY WATCH THE NHS ENGLAND PRESENTATION ABOUT SAPROPTERIN (KUVAN) PKU BAKING: OVERCOMING GUILT OR FEAR OF FAILURE…. A BLOG BY CLAIR COOKING FOR MYSELF… A BREAK FROM CRISPS AND SOUP! A BLOG FROM CLAIR NSPKU MARK INTERNATIONAL PKU DAY GUIDES TO HELP YOU SHOP FOR THE PKU DIET

LOW PROTEIN SNACKS

TAKING PROTEIN SUBSTITUTES – CLAIR DIETARY INFORMATION FOR THE TREATMENT OF PHENYLKETONURIA BRANDED EXCHANGE FREE FOOD LIST SCHOOL MEALS – THE PKU DIET AT SCHOOL POLLY WRITES ON “PKU IN THE LOCKDOWN” NEW GUIDE TO PKU FOOD EXCHANGES

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