HDSA Western PA Chapter

06/17/2026

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

06/15/2026

06/11/2026

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

06/04/2026

Tonight, we welcome back Marsha Robbins, trainer, educator, and pet therapy guru. Marsha is part of the Human Animal Rescue Pittsburgh and the founder of Therapy Dog Tuesday at the University of Pittsburgh. She will bring other trained therapists and their trained therapy dogs and will give us a history of pet therapy and its benefits.
Please do not bring any food, and if you are highly allergic to dogs, please pick another month to come, as we may have multiple dogs with us that evening.

Join us:
Date: Thursday, June 4, 2026
Time: 7:00-9:00 pm
Where: St. George Church - 3400 Dawson Street - Pittsburgh, PA 15213.
Parking: There is a small parking lot to the side of the church. Enter on the left side of the church; a large wooden door that leads you to the elevator. Press button 1 in the elevator to lead you down to the church hall.

06/02/2026

This Thursday! Marsha Robbins, trainer, educator, and pet therapy guru is part of the Human Animal Rescue Pittsburgh and the founder of Therapy Dog Tuesday at the University of Pittsburgh. She will bring other trained therapists and their trained therapy dogs and will give us a history of pet therapy and its benefits. Then we will have time to spend with the dogs for positive engagement and stress relief. If you are highly allergic to dogs, please pick another month to come, as we may have multiple dogs with us that evening. Please bring a friend or family member with you but please, do not bring your own dog or any food.

Join us:
Date: Thursday, June 4, 2026
Time: 7:00-9:00 pm
Where: St. George Church - 3400 Dawson Street - Pittsburgh, PA 15213.
Parking: There is a small parking lot to the side of the church. Enter on the left side of the church; a large wooden door that leads you to the elevator. Press button 1 in the elevator to lead you down to the church hall.