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HDSA's National Youth Alliance - NYA

Who is planning to go to HDSA's National Convention in Los Angeles this June? Haven't really thought about it yet? Well you should, either way... Because all of... us will be there!

If you're not sure what we are talking about, reach out to one of the board members to get more information about Convention and other NYA events coming up for 2018!

The NYA offers full and partial scholarships for people age 29 and under who want to attend National Convention but may not be able to afford the trip. Check out the link below to apply and ask one of us if you have any questions!

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Letter from Louise Vetter - HDSA

Dear HD Community Member:

As you may know, some members of the HD community are facing significant challenges right now in secu...ring financial assistance to help off-set the sometimes large co-pays for chorea management prescriptions.

Caring Voice Coalition, the largest supporter of such aid, has announced that it will not be awarding any financial assistance in 2018. Visit for more information on this decision. (Please note, we have been assured that CVC's disability assistance and health insurance counseling programs continue unaffected by this decision.) In addition, we are aware that the HealthWell Foundation's movement disorders fund & Huntington's disease fund have been depleted.

Prescriptions co-pays vary greatly based on health insurance provider. While these costs have always been a concern, we have been grateful for the financial assistance programs that have helped alleviate the burden and close the gap between price and access.

Since the Caring Voice announcement, HDSA has been contacting all of our partners and known HD assistance programs to identify potential resources for the nationwide HD community. It is important to note that unfortunately, due to significant infrastructure and complicated legal requirements necessary to implement a program such as this, HDSA cannot respond to this urgent need. As a result, our role is to advocate for the regulators and manufacturers alike to ensure mechanisms are in place to support HD families in accessing their prescribed medications.

Following are the phone numbers for the primary prescription resource services of which we are aware:

Xenazine Information Center:
For patients prescribed Xenazine, which is manufactured by Lundbeck.

Austedo Shared Solutions Hotline
For patients prescribed Austedo, which is manufactured by Teva.

Biotek reMedys Foundation
For some patients receiving tetrabenazine (eligibility for support may be affected by insurance coverage and related variables).

Additionally, the National Organization for Rare Disorders (NORD) continues to have a co-pay assistance fund for patients being treated for chorea. We are aware that they are slow to onboard 2018 patients, but you may contact them at National Organization for Rare Disorders 1-855-864-4027 or by emailing

Most importantly we encourage you to talk with your clinician about difficulties you are facing accessing your prescription to see what options and solutions they may be able to identify.

We are hopeful that new funds will be identified in the coming weeks, and you can be sure that we will share that news with you as soon as it becomes available. In the meantime, HDSA's network of social workers is also available to help you problem solve.

Thank you for your patience as we work together through this difficult time.


Louise Vetter
President & Chief Executive Officer
Huntington's Disease Society of America

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Caring Voice Coalition is dedicated to improving the lives of people with chronic illnesses—offering outreach services that provide financial, emotional and educational support.
Huntington's Disease Society of America -NC Chapter updated their profile picture.
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In 2018, uniQure N.V. expects to advance the clinical development of AMT-130, its investigational gene therapy for the treatment of Huntington’s disease.
The Guthrie Sessions at HDSA Do Re Mi by Woody Guthrie Performed by Woody's grandson Cole Quest Filmed at Triad Theater in New York City Directed by Rae Maxw...
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Huntington's Disease Society of America-NC Chapter- January 2018- Chapter News!! -

President Shaun Bateman Vice President Rebecca Gibbs Secretary Cindy Bland Treasurer Wanda BenbowPlease send out a big Thank You to Kathy Martinek for her hard work as the previous President of the NC Chapter.

Happy New Years from the North Carolina Chapter.

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Huntington's Disease Society of America


New York, NY, December 11, 2017 –... Today, the Huntington’s disease community achieved a goal that would not have been possible without the support and dedication of the families, physicians and researchers who passionately pursue a treatment for Huntington’s disease (HD). Ionis’ announcement of the completion of the Phase 1/2a study of IONIS-HTTRX is a historic moment in the fight against HD as it represents the successful completion of the first trial to treat the underlying cause of Huntington’s disease, the genetic mutation itself.

The fact that levels of mutant huntingtin were reduced in correlation to the dose of IONIS-HTTRx that was given is significant, and the fact that participants in this first Phase 1/2a study are able to continue on the drug through open label extension gives us optimism regarding its safety.

As the next phase of clinical study of IONIS-HTTRx gets underway, we look forward to continuing to partner with Roche and the many dedicated clinicians and scientists who work tirelessly to bring greater help and hope to Huntington’s families everywhere. We know families will have many questions about what happens next. We always recommend you speak with your doctor about any medical questions you may have. and will continue to provide the timeliest information regarding development of meaningful treatments for HD.

READ COMMUNITY ANNOUNCEMENT:…/breaking-news-update-on-the-status-of-th…/

Ionis Pharmaceuticals

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Today is an exciting day for the Huntington’s disease community. The Phase 1/2a Study of IONIS-HTTRx, the first therapy in clinical development designed to target the underlying cause of HD, has been completed. We are pleased to share an update on the status of the IONIS-HTTRx program and its futu...