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Find A Cure Transit Huntington's Resources:
CHOIR Stars for the Creative and Performing Arts
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C.H.O.I.R. Stars for the Creative and Performing Arts® is a non-profit organization committed to providing hope and inspiration through the creative and performing arts to teens and young adults with a variety of health conditions. Our organization holds weekend arts workshops throughout the year for teens and young adults with chronic health conditions and their siblings, and offers additional programming such as our multiple free family arts outings a year. In addition, we provide arts outreach to youth in hospitals, and provide awareness for the health conditions our C.H.O.I.R. families are facing.
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A resource for disabling conditions that can be considered severe enough by the Social Security Administration (SSA) to qualify a person for Social Security disability benefits.
These conditions can interfere with an individual’s ability to achieve gainful employment, thereby making that person eligible for SSDI or SSI benefits.
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The HDLighthouse mission is to present and explain the latest research findings so that HD families can become proactive in their care, have hope for the future, and make good decisions in the present.
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The National Research Roster for Huntington Disease Patients and Families was established in 1979 at Indiana University. The goal of the Roster is to help researchers learn more about Huntington disease. To accomplish this goal, the Roster has involved nearly 3,000 families in Huntington disease research.
HD Support Groups California Central Coast
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HD Support Group - California Central Coast
HDSA - Oklahoma Chapter - Facebook group
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Oklahoma Chapter of Huntington's Disease
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Our mission is to promote activities that provide Hope to victims of Huntington's Disease through Education, thereby raising Awareness and the funding necessary to continue life-giving Research.
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Educational site sponsored by Stanford.
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Huntington's Disease Drug Works (HDDW) founded by LaVonne and Nathan Goodman in 2004 has evolved over the years. At present the focus is providing information on present treatment options for Huntington's disease that include:
* Drugs that are presently available and used (with variable success) for treatment of symptoms that include chorea, depression, anxiety, irritability, agitation, psychosis, apathy and rigidity.
* Supplements and life-style modifications that are available that may be useful treatments for neuroprotection.
We will also provide information on drug development and clinical trials:
* Reports on drug candidates and their sponsoring companies.
* Updates on progress in finding biomarkers.
* Clinical trial information and education.
Huntington's Disease Society of America
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We are a national non-profit voluntary health agency dedicated to finding a cure for Huntington's Disease. We provide vital support, information and educational services to improve the lives of those affected by HD, offer resources and guidance for HD families through our national network of volunteer-based chapters and affiliates as well as through our HDSA Centers of Excellence for Family Services and promote and support research to find a cure for HD.
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The Huntington Society of Canada is a national network of volunteers and professionals united in the fight against HD since 1973.
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Joey's Song is a series of CD's that brings together national and international artists to raise money for epilepsy research and advocacy, in honor of Joey Gomoll. Joey was just shy of 5 years old when he passed away in March 2010. In the months since then his father, and a passionate group of musicians, friends and supporters, have pulled together a collection of rare and unreleased music, as well as special recordings and children's songs. Joey's Song: Volume One and Joey's Song for Kids: Volume 1 were released January 25, 2011! Get your copies today!
Low Country HD - Georgia And South Carolina
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The purpose of this web site is to provide information pertinent to Huntington's Disease families, caregivers, and health care professionals in Georgia and South Carolina, in a format easy to understand and use.
National Organization for Rare Diseases (NORD)
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NORD’s vision and guiding principles on which our advocacy initiatives are based:
A national awareness and recognition of the challenges faced by people living with rare diseases and the associated costs to society.
A nation where people with rare diseases can secure access to diagnostics and therapies that extend and improve their lives.
A social, political, and financial culture of innovation that supports both the basic and translational research necessary to create diagnostic tests and therapies for all rare disorders.
A regulatory environment that encourages development and timely approval of safe and effective diagnostics and treatments for patients with rare diseases.
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Film Festival sponsored by American Academy of Neurology Foundation
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Patient Services, Inc. (PSI) is the "ground breaking" 501(c)(3) non-profit, charitable organization of its kind. Two decades ago, we recognized the importance of providing a “safety net” for patients with chronic illnesses who were struggling to keep up with expensive premiums and co-payments. Since 1989 we have led the charge to provide much needed patient assistance, soliciting donations to fund thousands of patients and their families in a myriad of disease areas.
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Caring for Caregivers
Thomas Cellini Huntington's Foundation
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The Thomas Cellini Huntington’s Foundation was formed in 2005 to support families diagnosed with Huntington’s Disease.
Find A Cure Transit Huntington's Resources:
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