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European Medicines Agency (EMA) Greenlights Mitochon Pharmaceuticals to Initiate Phase I/IIa Biomarker Study in Neurodegenerative Diseases

katie8288

Jan 111 min read

European Medicines Agency (EMA) Greenlights Mitochon Pharmaceuticals to Initiate Phase I/IIa Biomarker Study in Neurodegenerative Diseases

BLUE BELL, Pa.--(BUSINESS WIRE)--Mitochon Pharmaceuticals today announced that it was awarded approval from EMA to begin enrollment for a...

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HD Deserves a Voice; Fill Out the FDA Accelerating Access to Critical Therapies Public Docket

katie8288

Dec 19, 20233 min read

HD Deserves a Voice; Fill Out the FDA Accelerating Access to Critical Therapies Public Docket

Accelerating Access to Critical Therapies for ALS Act – ACT for ALS - Action Plan for Rare Neurodegenerative Diseases including...

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uniQure Announces Update on Phase I/II Clinical Trials of AMT-130 Gene Therapy for the Treatment of Huntington’s Disease

katie8288

Dec 19, 20232 min read

uniQure Announces Update on Phase I/II Clinical Trials of AMT-130 Gene Therapy for the Treatment of Huntington’s Disease

Dear Huntington’s Disease Patient Organization Leaders, This morning, uniQure issued a press release announcing interim data from 39...

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Patient Assistance Programs for INGREZZA

katrina4384

Dec 4, 20231 min read

Patient Assistance Programs for INGREZZA

Navigating Insurance Approval & Patient Financial Assistance For More Information on Financial Assistance Programs For INGREZZA, Please...

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SELECT-HD, Complete! - Expecting to Report Data in Q2 of 2024

katrina4384

Nov 20, 20230 min read

SELECT-HD, Complete! - Expecting to Report Data in Q2 of 2024

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Help 4 HD's HD Resource Database: Phase One

katrina4384

Nov 13, 20231 min read

Help 4 HD's HD Resource Database: Phase One

Help 4 HD has created the HD Resource database to help those impacted by Huntington's disease and Juvenile onset Huntington's disease....

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katie8288

Nov 7, 20230 min read

Help 4 HD Survey; Risk and Tolerance

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This Quarter, Help 4 HD Asked a Few Questions, and the Community Responded!

katrina4384

Nov 5, 20233 min read

This Quarter, Help 4 HD Asked a Few Questions, and the Community Responded!

I wish I knew that it would be possible to find happiness again when I found out about Huntington's disease. I wish I knew that most of...

305 views1 comment

A Research Study about Anonymous Genetic Testing for HD

katrina4384

Nov 1, 20231 min read

A Research Study about Anonymous Genetic Testing for HD

Survey Overview We are conducting a research study at the University of Texas Health Science Center at Houston about anonymous genetic...

297 views0 comments

katrina4384

Oct 25, 20233 min read

Let's Talk About GEN HD1 and GEN HD2

Can you explain what happened in Gen HD1 and why you have a Gen HD2 study? What we realized after we looked at generation HD1 was the...

328 views1 comment

FDA Grants Orphan Drug Designation for the Treatment of Huntington’s Disease

katie8288

Oct 18, 20231 min read

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 ...

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INGREZZA - For the treatment of chorea associated with Huntington's Disease (HD) TOOLKIT & RESOURCES

katrina4384

Sep 26, 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

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Help 4 HD Announces Symposium Schedules & Night Events!

katrina4384

Sep 21, 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...

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katrina4384

Sep 14, 20231 min read

Neurocrine Biosciences

Neurocrine Biosciences Announces U.S. FDA Accepts New Drug Application for INGREZZA (valbenazine) Oral Granules Sprinkle Formation

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Understanding the Clinical Trial Process for Huntington's Disease Families

katie8288

Aug 20, 20235 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...

339 views0 comments

Help 4 HD International Exhibits and Presents at the Crisis Intervention Team International (CIT)

katie8288

Jul 28, 20239 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...

391 views1 comment

katrina4384

Jul 16, 20232 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...

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Testing, what to do first; words from the community.

katrina4384

Jul 6, 20234 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...

289 views0 comments

katrina4384

Jun 28, 20233 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...

341 views1 comment

PTC Therapeutics Shares Positive Interim Data from PIVOT-HD Clinical Trial

katie8288

Jun 21, 20235 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 -...

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