HDSA's Eastern PA Chapter

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HDSA's Eastern PA Chapter HDSA is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington's Disease 💙

💙 Save the Date! 💙🚶‍♂️🚶‍♀️Mark your calendars now for the 2026 Philly Team Hope Walk on Saturday, November 1!Join us as ...
22/06/2026

💙 Save the Date! 💙🚶‍♂️🚶‍♀️

Mark your calendars now for the 2026 Philly Team Hope Walk on Saturday, November 1!

Join us as we come together to raise awareness, honor loved ones, support families, and fund critical research in the fight against Huntington's Disease!

🔗 Link in bio: FREE to walk!

We can't wait to walk with you! 💙

Today’s announcement from uniQure marks an encouraging and meaningful step forward for the Huntington’s disease communit...
17/06/2026

Today’s announcement from uniQure marks an encouraging and meaningful step forward for the Huntington’s disease community.

The FDA’s indication that three-year data from the Phase I/II AMT-130 study may serve as the primary basis for a BLA for accelerated approval offers renewed hope to families who have been waiting far too long for treatment options.

This milestone reflects the power of a united HD community — families, advocates, clinicians, partner organizations, and Members of Congress — who helped ensure that the voices of those impacted by HD were heard.

While there is still important work ahead, including the regulatory process and a necessary confirmatory study, today brings hope and momentum.

HDSA remains committed to working with regulators, uniQure, HD sister organizations, clinicians, and the broader healthcare community to help move these next steps forward safely and as expeditiously as possible.

Read HDSA’s full statement: https://hdsa.org/news/hdsa-statement-on-uniqures-amt-130-regulatory-update/

Help for Today. Hope for Tomorrow.

HDSA Statement on uniQure’s AMT-130 Regulatory Update 1

In a significant reversal from its March 2026 position, the FDA has told uniQure that data already collected from AMT-13...
17/06/2026

In a significant reversal from its March 2026 position, the FDA has told uniQure that data already collected from AMT-130 clinical trials can support an expedited approval application in the United States.

The FDA also indicated openness to a follow-up trial where participants in the control group would continue on their current standard of care rather than undergoing a sham brain surgery, which would address a major ethical concern the HD community has raised.

uniQure plans to file for approval in the third quarter of 2026.

To read the full press release, click here:https://hdsa.org/wp-content/uploads/2026/06/PR_TypeB-Update_June-2026_06.17.26_Final-1.pdf and to read the Community Letter, visit:https://hdsa.org/wp-content/uploads/2026/06/2026-June-17-uniQure-Regulatory-Update_Community-Statement_Final.pdf

On June 2, 2026, the Huntington’s Disease Society of America (HDSA) joined rare disease leaders, policy experts, patient...
11/06/2026

On June 2, 2026, the Huntington’s Disease Society of America (HDSA) joined rare disease leaders, policy experts, patient advocates, and congressional offices for a congressional townhall briefing, “The Pathway to Cures and Treatments for Rare Diseases,” at the Rayburn House Office Building.

The event featured remarks and participation from Rep. Morgan Griffith and Rep. Jake Auchincloss, who joined advocates and rare disease leaders in discussing the importance of advancing meaningful pathways to treatments and cures for rare disease communities.

HDSA thanks the Congressional Rare Disease Caucus, Rep. Griffith, Rep. Auchincloss, congressional staff, patient advocates, and rare disease partners for their participation and commitment to advancing progress for rare disease communities.

To watch the full townhall briefing, visit: https://www.youtube.com/watch?v=EgBECsklK08

08/06/2026
💙 ONLY 2 DAYS TO GO! ⛳️The countdown is on, and we are getting so excited to welcome everyone to Tee-Off for HD this Sun...
06/06/2026

💙 ONLY 2 DAYS TO GO! ⛳️

The countdown is on, and we are getting so excited to welcome everyone to Tee-Off for HD this Sunday!

A special thank you to our incredible sponsors whose generosity helps make this event possible. Your support allows us to continue raising awareness, supporting families, and strengthening the Huntington's disease community.



Delaware County Linen
Joseph Coleman Plumbing Heating & Air

We're looking forward to:
⛳ Great golf
🍽️ Great food
🎟️ Great prizes
💙 Great people

Most importantly, we're looking forward to spending the day with all of YOU.

See you Sunday!

⛳️ 3 DAYS UNTIL TEE-OFF FOR HD! 💙Have you seen some of the incredible raffle items waiting for you on Sunday?!🎟️ Phillie...
04/06/2026

⛳️ 3 DAYS UNTIL TEE-OFF FOR HD! 💙

Have you seen some of the incredible raffle items waiting for you on Sunday?!

🎟️ Phillies tickets
🏌️ Golf outings
⛳ Golf accessories
🏈 Eagles & Flyers signed memorabilia
💎 Jewelry
🎁 And so much more!

Plus...
💵 50/50 raffle
🎉 Door prizes

Every raffle ticket purchased helps support the Huntington's disease community while giving you a chance to take home some amazing prizes.

We can't wait to see everyone this Sunday at Topgolf King of Prussia! 💙

⛳️💙 THE COUNTDOWN IS ON! 💙⛳️Just 4 days until we TeeOff Fore HD at Topgolf King of Prussia!We are so excited to spend th...
03/06/2026

⛳️💙 THE COUNTDOWN IS ON! 💙⛳️

Just 4 days until we TeeOff Fore HD at Topgolf King of Prussia!

We are so excited to spend the afternoon with an incredible community of supporters, families, sponsors, volunteers, and friends—all coming together to make a difference for those impacted by Huntington's disease.

We're looking forward to:
⛳️ 3 hours of Topgolf fun
🍽️ A delicious buffet
🎟️ Amazing raffle prizes
💵 50/50 raffle
🎉 Door prizes
💙 Meaningful connections and unforgettable memories

Thank you to everyone who purchased tickets, donated, sponsored, volunteered, and helped make this event possible. We can't wait to see you on Sunday!

Who's ready to Tee-Off for HD? 🙌

Address

PO Box 1606

19020

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