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FDA Grants Orphan Drug Designation for the Treatment of Huntington’s Disease
Dear Huntington’s Disease Advocacy Community, We are proud to share that today Sage Therapeutics announced the U.S. Food and Drug ...
katie8288
Oct 18, 20231 min read


INGREZZA - For the treatment of chorea associated with Huntington's Disease (HD) TOOLKIT & RESOURCES
Find out more here: INGREZZA HDC Launch Toolkit_FINAL.pdf
katrina4384
Sep 26, 20231 min read


Help 4 HD Announces Symposium Schedules & Night Events!
Welcome Party: Luau Style! 4 Rooms Packed Full of Education, Resources, Support, and Community! Award Gala and Farewell Party! Thank you...
katrina4384
Sep 21, 20231 min read


Neurocrine Biosciences
Neurocrine Biosciences Announces U.S. FDA Accepts New Drug Application for INGREZZA (valbenazine) Oral Granules Sprinkle Formation
katrina4384
Sep 14, 20231 min read


Understanding the Clinical Trial Process for Huntington's Disease Families
The clinical trial process is an essential part of the research journey, a critical step in bringing new treatments and therapies to our...
katie8288
Aug 20, 20235 min read


Help 4 HD International Exhibits and Presents at the Crisis Intervention Team International (CIT)
Help 4 HD International's LEEP program began in 2014 when Help 4 HD International exhibited at its first International Association of...
katie8288
Jul 28, 20239 min read


Please stop saying that about HD...
1. So, this isn't quite on topic, but the one thing I'm tired of seeing..... I'm THRILLED Hollywood is recognizing HD, but my issue is...
katrina4384
Jul 16, 20232 min read


Testing, what to do first; words from the community.
We asked our social media followers, 'What is one thing you should do before getting tested?' the discussions were great! One of the very...
katrina4384
Jul 6, 20234 min read


We Asked, and the Community Answered.
We Asked, and the community Answered. When friends or the community ask how they can help, are you always at a loss for ideas? Let's...
katrina4384
Jun 28, 20233 min read


PTC Therapeutics Shares Positive Interim Data from PIVOT-HD Clinical Trial
PTC Therapeutics Shares Positive Interim Data from PIVOT-HD Clinical Trial in Huntington's Disease Patients June 21, 2023 PDF Version -...
katie8288
Jun 21, 20235 min read


uniQure Announces Update on U.S. Phase I/II Clinical Trial of AMT-130 Gene Therapy
Dear Huntington’s Disease Patient Organization Leaders, We are writing to let you know that this morning uniQure issued a press release...
katie8288
Jun 21, 20232 min read


Eyes, Ears, Nose, and Paws help Olivia, who lives with JoHD, find her forever partner
Olivia Eiger is a social teen, who recently celebrated her 17th birthday and is planning to commemorate both her birthday and going into...
katie8288
Jun 8, 20232 min read


HD Awareness Month 2023, Some Patient/Family Response.
What do you wish healthcare workers were more mindful of with HD patients? Community Response: · I wish they were educated about...
katie8288
May 26, 20238 min read


Help 4 HD is featured on Movement Disorder Policy Coalition
https://www.movementdisorderspolicy.org/news/2023/5/11/help-4-hd
katie8288
May 23, 20231 min read


katie8288
May 16, 20230 min read


An HD Awareness Message from Charles Fisher
Hello, my name is Charles Fisher. This is my story about Huntington's disease. I got made fun of when I was younger, and I still get...
katie8288
May 8, 20231 min read


What has your family endured due to a lack of awareness about HD? The community responds.
• We planned a friend trip to Vegas after my husband’s diagnosis. We all sat down at a poker table to play. The whole table was just our...
katie8288
May 1, 20236 min read


HD community letter from Prilenia about the topline results from the PROOF-HD clinical trial.
April 25, 2023 Dear Huntington’s Disease Community, We are reaching out to provide an important update about the topline results from our...
katie8288
Apr 25, 20234 min read


I am an adult living with JoHD—an interview with Ashley.
I am an adult living with JoHD—an interview with Ashley. We want to thank Ashely for doing this short interview with Help 4 HD. It helped...
katie8288
Apr 17, 20234 min read


katie8288
Apr 4, 20230 min read
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