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STAGES OF HD
Huntington’s disease is a hereditary and progressive neurodegenerative disease characterized by uncontrolled movement, mental instability, and loss of cognitive function.It can be divided into five stages of disease progression. Stage 1: Early stage. The early stage starts at disease onset and lasts for approximately eight years. During the early stage, the patient already has been WOMEN WITH HUNTINGTON'S HAVE WORSE SYMPTOMS THAN MEN Women with Huntington’s disease have worse motor, cognitive, and depressive symptoms than men with the condition, according to data from the global Enroll-HD observational study.. Notably, no sex-specific differences were found for age at diagnosis and symptom progression over the four years of follow-up. These findings help to increase awareness of the clinical differences between women and FDA GIVES GO-AHEAD FOR HUNTINGTON'S TRIAL OF VY-HTT01 GENE The U.S. Food and Drug Administration (FDA) has granted Voyager Therapeutics permission to start a clinical trial testing VY-HTT01, its investigational gene therapy for Huntington’s disease. Voyager is planning to launch the Phase 1/2 clinical trial, called VYTAL, later this year. VYTAL will be TOMINERSEN (PREVIOUSLY IONIS-HTTRX AND RG6042) Tominersen (previously IONIS-HTTRx and RG6042), is a potential treatment for Huntington’s disease that Roche is developing. The therapy, designed by Ionis Pharmaceuticals, was the first treatment in clinical development that sought to target the underlying cause of Huntington’s disease.Ionis licensed the treatment to Roche in late 2017, making Roche responsible for its further PAIN MANAGEMENT OFTEN NEGLECTED IN HUNTINGTON’S The most painful conditions in Huntington’s, said Achterberg, are limb pain, headache, abdominal pain and fractures. “I think we should do more work in validation of pain tools, including observational pain instruments,” he said. “And for clinicians, I suggest you be especially aware of abdominal pain.”. Posterpresentation on the
CRISPR/CAS9 SYSTEM
CRISPR/Cas9 System. Huntington’s disease is a heritable genetic disorder characterized by chorea (tremors), psychiatric problems, and loss of thinking ability. CRISPR/Cas9 is a new gene editing technique that could potentially treat Huntington’s disease. The approach is currently in preclinical testing, but early results are promising. SEXUAL PROBLEMS IN HUNTINGTON'S DISEASE Motor problems predominate in Huntington’s disease, and it is common for patients to encounter issues with sexuality. Studies have found that up to 75 percent of women and 85 percent of men with Huntington’s report difficulties in their sexual relations.. Altered sexuality in Huntington’s disease. Adults with Huntington’s commonly face a loss of interest in sex. HUNTINGTON'S PATIENTS CAN USE OCCUPATIONAL THERAPY TO KEEP Occupational therapy is designed to help people who face challenges carrying out day-to-day activities due to an illness like Huntington’s disease, an injury, or disability.. An occupational therapist can help a Huntington’s patient with basic skills such as eating, walking, bathing, and dressing. BIOMARKERS IDENTIFIED TO TRACK HUNTINGTON'S DISEASE IN The study, “ MicroRNAs in CSF as prodromal biomarkers for Huntington disease in the PREDICT-HD study ,” was published in the journal Neurology. The study reports on the results of the clinical trial PREDICT-HD ( NCT00051324) that examined potential biological markers of Huntington’s disease in 60 adult Huntington’s gene carriers whohad
HUNTINGTON'S DISEASE NEWS HOME U.S. lawmakers have again introduced legislation that would speed up the process for Huntington’s disease (HD) patients to get Medicare and Social Security Disability Insurance (SSDI) benefits. The Huntington’s Disease Disability Insurance Access Act of 2021 — S 868/ HR 2050 — would waive the mandatory two-year. May 7, 2021 Newsby
STAGES OF HD
Huntington’s disease is a hereditary and progressive neurodegenerative disease characterized by uncontrolled movement, mental instability, and loss of cognitive function.It can be divided into five stages of disease progression. Stage 1: Early stage. The early stage starts at disease onset and lasts for approximately eight years. During the early stage, the patient already has been WOMEN WITH HUNTINGTON'S HAVE WORSE SYMPTOMS THAN MEN Women with Huntington’s disease have worse motor, cognitive, and depressive symptoms than men with the condition, according to data from the global Enroll-HD observational study.. Notably, no sex-specific differences were found for age at diagnosis and symptom progression over the four years of follow-up. These findings help to increase awareness of the clinical differences between women and FDA GIVES GO-AHEAD FOR HUNTINGTON'S TRIAL OF VY-HTT01 GENE The U.S. Food and Drug Administration (FDA) has granted Voyager Therapeutics permission to start a clinical trial testing VY-HTT01, its investigational gene therapy for Huntington’s disease. Voyager is planning to launch the Phase 1/2 clinical trial, called VYTAL, later this year. VYTAL will be TOMINERSEN (PREVIOUSLY IONIS-HTTRX AND RG6042) Tominersen (previously IONIS-HTTRx and RG6042), is a potential treatment for Huntington’s disease that Roche is developing. The therapy, designed by Ionis Pharmaceuticals, was the first treatment in clinical development that sought to target the underlying cause of Huntington’s disease.Ionis licensed the treatment to Roche in late 2017, making Roche responsible for its further PAIN MANAGEMENT OFTEN NEGLECTED IN HUNTINGTON’S The most painful conditions in Huntington’s, said Achterberg, are limb pain, headache, abdominal pain and fractures. “I think we should do more work in validation of pain tools, including observational pain instruments,” he said. “And for clinicians, I suggest you be especially aware of abdominal pain.”. Posterpresentation on the
CRISPR/CAS9 SYSTEM
CRISPR/Cas9 System. Huntington’s disease is a heritable genetic disorder characterized by chorea (tremors), psychiatric problems, and loss of thinking ability. CRISPR/Cas9 is a new gene editing technique that could potentially treat Huntington’s disease. The approach is currently in preclinical testing, but early results are promising. SEXUAL PROBLEMS IN HUNTINGTON'S DISEASE Motor problems predominate in Huntington’s disease, and it is common for patients to encounter issues with sexuality. Studies have found that up to 75 percent of women and 85 percent of men with Huntington’s report difficulties in their sexual relations.. Altered sexuality in Huntington’s disease. Adults with Huntington’s commonly face a loss of interest in sex. HUNTINGTON'S PATIENTS CAN USE OCCUPATIONAL THERAPY TO KEEP Occupational therapy is designed to help people who face challenges carrying out day-to-day activities due to an illness like Huntington’s disease, an injury, or disability.. An occupational therapist can help a Huntington’s patient with basic skills such as eating, walking, bathing, and dressing. BIOMARKERS IDENTIFIED TO TRACK HUNTINGTON'S DISEASE IN The study, “ MicroRNAs in CSF as prodromal biomarkers for Huntington disease in the PREDICT-HD study ,” was published in the journal Neurology. The study reports on the results of the clinical trial PREDICT-HD ( NCT00051324) that examined potential biological markers of Huntington’s disease in 60 adult Huntington’s gene carriers whohad
RARE 2030 ACTION CAMPAIGN PUSHING FOR EUROPEAN PLAN FOR Eurordis opened a campaign, called Rare 2030 Action, that is seeking to establish a European action plan for rare diseases to ensure that none of the 30 million people in Europe living with rare diseases are left behind by the start of a new decade.. As part of the campaign, rare disease patients and their caregivers, family members, and others are being invited use an online form to tell HUNTINGTON'S DISEASE CAUSES The underlying cause of Huntington’s disease, which is characterized by a progressive decline in movement, cognition, and mental stability, is a mutation in a gene called huntingtin (HTT).. Inheritance. The HTT gene is found on chromosome 4, of which everyone has two copies, one inherited from each parent. Huntington’s is an autosomal dominant disease meaning that a defect in only one of WHILE BUYING A CONDO, I WAS REMINDED OF THE IMPORTANCE OF Alexus Jones Alexus is a columnist at BioNews — the publisher of this site — where she writes about her. experience with Huntington’s disease. Alexus is all too familiar with the disease: her grandfather and mother have it, and she recently learned she does, too. Alexus graduated from MIT with a bachelor’s in mechanical engineering and minors in health policy and management. INFORMATION ABOUT COVID-19 FOR HUNTINGTON'S DISEASE COVID-19, short for coronavirus disease 2019, is an infection caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), a newly identified and highly contagious pathogen not previously seen in humans. Though it belongs to the same category of viruses as SARS and influenza viruses, SARS-CoV-2 is a different strain with its owncharacteristics.
RARE DISEASE ADVOCATES CAN TRY FOR GRANTS AHEAD OF CAPITOL Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the EveryLife Foundation will award grants to top advocates of rare disease organizations who participate in the week’s pre-events.. The top 50 point-earners will be eligible to win $1,000 to $5,000in grants, totaling up to $100,000, the foundation announced in a release. SINCE HER DIAGNOSIS, MY WIFE HAS BENEFITED FROM AN 1 day ago · Carlos Briceño Carlos is a journalist in the Midwest, who through the grace of God has been blessed with a brilliant, beautiful, and courageous wife and daughter. His wife found out she was gene-positive for Huntington’s Disease (HD) at the age of 41, while his daughter found out she was gene-positive for HD when she was22.
ANTIDEPRESSANTS
Patients with Huntington’s disease often experience depression; in fact, it is the most common psychiatric disorder associated with this disease.. Depression may be evidenced as a sulky mood, tiredness, a loss of interest, poor appetite and weight loss. Such symptoms can be managed with a class of medications known as antidepressants.CRISPR/CAS9 SYSTEM
CRISPR/Cas9 System. Huntington’s disease is a heritable genetic disorder characterized by chorea (tremors), psychiatric problems, and loss of thinking ability. CRISPR/Cas9 is a new gene editing technique that could potentially treat Huntington’s disease. The approach is currently in preclinical testing, but early results are promising. BEHAVIORAL CHANGES IN HUNTINGTON'S DISEASE The behavioral changes vary from patient to patient, but often include apathy, marked by a loss of motivation to start or finish activities. Patients may be irritable or depressed. They may lack inhibition, and do or say things that one would normally find embarrassing. People with Huntington’s may also be less able to control their emotions LAQUINIMOD - HUNTINGTON'S DISEASE NEWS Laquinimod (previously known as ABR-215062) is an investigative immunomodulator being developed by Active Biotech and Teva Pharmaceuticals to possibly treat Huntington’s disease. It is also being studied as a treatment for multiple sclerosis (MS). How laquinimod works. Laquinimod is a quinoline-3-carboxamide derivate (known as ABR-215062) with roquinimex as its main component.__
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* What Is Huntington’s Disease? * Causes of Huntington’s Disease * Symptoms of Huntington’s Disease * Delusions and Hallucinations* Chorea
* HD Symptoms – Behavioral Changes * Psychiatric Issues in Huntington’s Disease * Huntington’s Disease Symptoms – Communication Issues * Sexual Problems in Huntington’s Disease * Feeding Problems in Huntington’s Disease * Huntington’s Disease Diagnosis * Genetic Testing and Counseling * Stages of Huntington’s Disease * Living with Huntington’s Disease * Huntington’s Disease and Nutrition * Juvenile Huntington’s Disease* Treatments
* Approved Treatments* Antidepressants
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Vaccinex’s Pepinemab Halts Brain Shrinkage, Eases Symptoms in Early Huntington’s Patients, Results Shows*
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Molecule Seen to Reverse Huntington’s Repeat CAG Mutation*
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Enroll-HD Study Aims for Up to 30,000 Patients by 2023*
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Suspends Phase 1 Trial Testing Tominersen (RG6042) for Huntington’s*
Huntington's Disease News,
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Pediatric Rare Disease Therapies Increase, But Most Repurposed, StudyFinds
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UniQure Presents More Data Supporting the Effectiveness of Gene Therapy Candidate AMT-130*
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RG6042, Potential DMT in Phase 3 Trial, Named Orphan Drug in Japan*
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Antihypertensives Linked to Later Onset, Milder Disease in Huntington’s Patients, Large Study Finds*
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Elsevier Opens Books, Review Articles to Rare Disease ResearchersStarting Feb. 29
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Levels of Protein Linked to Parkinson’s Found in Huntington’s Patients, Study Says*
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Vermont Couple Talk of Huntington’s ‘Crippling’ Financial andEmotional Toll
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Patients, Supporters Worldwide Recognizing Rare Disease Day 2020*
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Variability Reflects Huntington’s Severity, According to New Sensor-Based Study of Walking Problems*
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Artificial Intelligence Can ‘See’ Progression of Ills Like Huntington’s in Blood Sample, Study Says*
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UCI to Develop Cell-Based Huntington’s Therapies*
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Efforts to Bring Patients into Treatment Decisions Focus of NORDWebinar
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Post-Brexit Move to Amsterdam Complete, EMA Renews Rare Disease Focus*
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Grants Orphan Status to EHP-102 for Treatment of Huntington’s*
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Striatal Neurons Require Functional Huntingtin Gene to Survive and Maintain Connections, Mouse Study Finds*
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Rexulti Eases Motor and Psychiatric Symptoms of Huntington’s, CaseReport Shows
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UniQure’s Gene Therapy AMT-130 for Huntington’s Shows Promising Results in Preclinical Studies*
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Disease-associated Molecular Fingerprint Identified in the Blood of Huntington’s Patients Using Light*
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Huntington’s Patient Finds Hope as Participant in GENERATION HD1Trial
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to Host European Conference on Huntington’s Disease in Mid-February*
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of Brain Development in Those at Risk for Huntington’s Expands with$18M NIH Grant
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Investigational Compound Induces Significant Drop in Mutant Huntingtin Protein, Ongoing Trial Data Show*
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Selecting Right Mouse Model Key for Huntington’s Research, Therapy Development, Study Finds*
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Finds Abnormal Neural Development May Contribute to Huntington’s Disease, Offering New Therapeutic Strategy*
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MicroRNA May Help Prevent Buildup of Toxic Proteins in Huntington’s Disease, Study Shows*
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‘Co-produced’ Walking Group Beneficial for Patients, But Better Models Are Needed, Study Finds*
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Therapy Takes Center Stage at 2019 NORD Summit*
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Ability to Recognize Face-like Objects Found in PresymptomaticPatients
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Secretary Alex Azar Touts White House Efforts to Cure Rare Diseases*
News Early
Study Identifies 3 Small Molecules That Target Root Cause ofHuntington’s
*
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Clears Way for MMJ to Import Cannabis Compounds for Trials in Huntington’s Disease and MS*
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Study Finds Huntingtin-lowering Compounds That Show TherapeuticPotential
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Pig Model of Huntington’s May be Advantageous in Preclinical Trials,Researchers Say
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Disease Film Festival Highlights Patient and Researcher Unity*
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Q-Motor Tool Shows Promise in Detecting Motor Changes in At-risk Children, Study Shows*
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Cell Development Appears Delayed in Juvenile Huntington’s, Stem CellStudy Reports
*
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Microprotein of Mitochondria Helps Regulate Protein Folding and Cell Stress Linked to Disease, Study Finds*
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and University of Vermont Establish Partnership to Study Gait Impairment in Huntington’s, other Movement Disorders*
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Inflammation and Changes in Brain’s Striatum Precede Huntington’s Symptoms, Study Finds*
News Length
of CAG Repeats in HTT Gene Expand with Age, Linked to Worse Clinical Outcomes, Study Finds*
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Psychosis Linked to More Severe Cognitive, Functional and Behavioral Symptoms, But Less Chorea, Study Finds*
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Handwriting Can Help Identify Asymptomatic Huntington’s, StudySuggests
*
News
Mutations Linked to Huntington’s Increase Nerve Cells’ Resistance to High Levels of Manganese, Study Finds*
News
Short-term Exercise Interventions Do Not Produce Significant Motor Benefits in Huntington’s Patients, Meta-analysis Reports*
News Study
Examines Levels of Trace Metals in Blood of Huntington’s Patients*
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Enzyme May Halt Accumulation of Mutant Htt Protein Clumps in NerveCells, Study Shows
*
News Apathy
Linked to Changes in Brain White Matter at Different Huntington’sStages, Study Finds
*
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2019 Rare Disease Summit Set for Oct. 21-22 in Washington, DC*
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Laquinimod Reduces Signs of Inflammation, Brain Atrophy in Huntington’s, Data Show*
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Huntington’s May Manifest in Early Phases of Embryo Development,Study Finds
*
News Study
Suggests Differences in How Memory Is Used in People with ManifestHuntington’s
*
News Age of
Onset in Huntington’s Linked to Property of CAG Repeat Length inStudy
*
News New
Small Molecule AZ67 May Help Prevent Brain Cell Death, Early Data Show*
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Gene-editing Tool SATI Can Target Different Kinds of Disease-causing Mutations, Mouse Study Suggests*
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Changes in Speech Mark Pre-symptomatic Huntington’s, Study Finds*
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‘Disorder’ Film Festival Offers Look at Siblings Touched by RareDiseases
*
News Study
Links Sensitivity to Loss with Apathy In Huntington’s Patients*
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Genome Center, Legal Expert Presents Ethical Dilemmas in Gene Editing*
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Lipids as Delivery Vehicle May Make CRISPR-Cas9 More Effective GeneEditing Tool
*
News
Researchers Find Genetic Overlap Between Psychiatric Disorders and Psychiatric, Cognitive Symptoms in Huntington’s*
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Nebraska’s Neena Nizar Seeks Cure for Jansen’s, One of World’sRarest Diseases
*
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Huntington’s Patients Have Difficulty Recognizing Mental States of Others, Study Reveals*
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Patients Prefer Less Invasive, No-Placebo Gene Therapy Trials, SurveySays
*
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Changes in Neostriatum Linked to Clinical Features of Huntington’s*
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Disease Groups Seek Public Support to Renew Newborn Screening Act inSenate
*
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Cell Transplants Using Nasal Delivery Show Promise in Huntington’sMouse Model
*
News
Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card*
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Data Show Neflamapimod’s Potential to Prevent Nerve CellDegeneration
*
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Protein Activity in Brain Linked to Depression, Potentially Even Treatment, in Huntington’s, Mouse Study Suggests*
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2 Trial Recruiting Early-stage Huntington’s Patients to Test Neflamapimod for Improving Cognition*
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Cannabinoid Derivatives Show Therapeutic Potential in Mouse Model, But EHP-102 Still Superior*
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European Initiative Targets Diagnosis, Treatment of Rare Diseases*
News Egypt
Leads World in Huntington’s Prevalence, But Lacks Clinical Trials on the Disease, Report Says*
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Scientists Discover Two Distinct Symptom Profiles in HD Patients*
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Macedonian Gaucher Activist Publicizes Plight of Rare Disease Patients*
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World’s First Alport Stamp Is Macedonian Mom’s Latest Win for RareDisease Patients
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Encouraging Brain Donations for Huntington’s Research Goal of HDSA and CHDI Foundation Partnership*
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Honors Industry, Patient Advocates at Rare Impact Awards Gala*
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Huntingtin’s Seeding Activity a Potential Early Biomarker of Huntington’s Disease, Study Says*
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Eurordis Unveils Integrated-care Initiative for Rare Disease Patients*
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Obsessive-compulsive, Perseverative Behaviors Prevalent, Particularly as Disease Progresses, Study Shows*
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Rare Diseases Clinical Research Network Opens Online Survey onCOVID-19
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May 11, 2020May 11, 2020 RARE DISEASES CLINICAL RESEARCH NETWORK OPENS ONLINE SURVEY ONCOVID-19
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May 8, 2020May 7, 2020 PRACTICING SELF-CARE AND LETTING GO OF THE GUILT All of my friends know about my love of wine. The first summer after I turned 21 I was in Maine, and I spent ...Read
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May 5, 2020May 5, 2020 ASKBIO ACQUIRES BRAINVECTIS AND POTENTIAL GENE THERAPY FORHUNTINGTON’S
AskBio announced that it has acquired BrainVectis, a company developing gene therapies for Huntington’s disease and other neurodegenerative conditions. The two companies will work to advance BrainVectis’ gene therapy ...Read
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April 30, 2020April 30, 2020 NORD WEBINAR OUTLINES COVID-19 RESPONSE ON FINANCIAL, POLICY FRONTS As the number of Americans infected with COVID-19 surpasses one million, it’s no surprise that people with rare diseases — whose immune systems were ...Read
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INDUSTRY LEADERS SEEK TO ADVANCE INNOVATIVE RESOURCES FOR RARE AND ORPHAN DISEASE COMMUNITIES AMID COVID-19 OUTBREAK April 29, 2020April 29, 2020 FFF Enterprises and BioNews announced today that both rare and orphan disease advocates are ...*
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ENROLLMENT COMPLETE FOR GENERATION HD1 TRIAL TESTING TOMINERSEN FORHUNTINGTON’S
April 28, 2020April 28, 2020 Roche has completed patient enrollment for its Phase 3 GENERATION HD1 clinical trial evaluating the potential ...*
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VACCINEX’S PEPINEMAB HALTS BRAIN SHRINKAGE, EASES SYMPTOMS IN EARLY HUNTINGTON’S PATIENTS, RESULTS SHOWS April 21, 2020April 21, 2020 Vaccinex’s experimental therapy pepinemab (VX15/2503) improves brain metabolism, halts its atrophy, and eases motor ...*
NEW PERSPECTIVES FROM A TRIP TO THE ER April 17, 2020April 15, 2020*
SMALL MOLECULE SEEN TO REVERSE HUNTINGTON’S REPEAT CAG MUTATION April 14, 2020April 14, 2020*
WE ARE TWO PEOPLE WITH ONE HEART April 14, 2020April 10, 2020*
BELIEVING IN THE IMPOSSIBLE April 7, 2020April 1, 2020*
FACTOR-H REACHES OUT TO HUNTINGTON’S NEGLECTED FAMILIES OF SOUTHAMERICA
April 7, 2020April 7, 2020 Huntington’s disease affects an average of 1 in 10,000 people worldwide. But in small, ...*
NORD’S ADVICE ON COVID-19: YOU’RE STRONGER THAN YOU THINK April 6, 2020April 2, 2020*
A 10-MINUTE WALK, AND A PURR THAT CHANGED MY LIFE April 3, 2020April 2, 2020*
THE IMPORTANCE OF HAVING ‘EMOTIONAL VITAMINS’ March 31, 2020March 26, 2020*
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PAIN MANAGEMENT OFTEN NEGLECTED IN HUNTINGTON’S, RESEARCHERS SAY March 31, 2020March 31, 2020*
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GENE THERAPY REPROGRAMS BRAIN CELLS IN MOUSE MODEL, IMPROVES MOTORFUNCTION
March 19, 2020March 19, 2020 In a proof-of-principle experiment, a new gene therapy approach with the potential to treat ...*
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LIFE’S TOO SHORT TO PANIC: APPRECIATE THE PRECIOUS MOMENTS March 17, 2020March 17, 2020 Listen, do you hear that sound? It’s the sound of people panicking.The cause ...
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ROCHE SUSPENDS PHASE 1 TRIAL TESTING TOMINERSEN (RG6042) FORHUNTINGTON’S
March 12, 2020March 12, 2020 A Phase 1 clinical trial testing Roche’s investigational therapy tominersen for Huntington’s disease has been ...Search for:
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Create your own user feedback survey May 23, 2016May 23, 2016 BLOCKING 2 ENZYMES SEEN TO REDUCE NERVE CELL LOSS IN FRUIT FLY MODELOF HUNTINGTON’S
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A collaboration between researchers at the University of Leicester, U.K., and the University of Maryland School of Medicine, Baltimore, may lead to a way of reversing some symptoms of neurogedenerative diseases, like Huntington’s, by blocking two specific enzymes of the kynurenine ... Read more HUNTINGTON’S DISEASE NEWS BIONEWS SERVICES, LLC1601 Market St.
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