Rare insights

Rare insights

The reclaimed horse (or is it a zebra?): ASCO edition

By Becky Pender

6 June 2025

Rare insights

From isolation to connection: One rare caregiver’s passion to build community

By admin

5 June 2025

Rare insights

“You look different.”

By admin

4 June 2025

Rare insights

Building a global patient registry for a rare disease: The story of the INPDR

By admin

2 June 2025

Rare insights

NephCure celebrates inaugural FSGS Awareness Day on June 10, 2025

By admin

29 May 2025

Rare insights

CureDuchenne Ventures invests in Entos Pharmaceuticals for development of a redosable, full-length dystrophin gene therapy

By admin

29 May 2025

Rare insights

A tapestry of hope, advocacy & community: Day 2 of the NPUK AFC and IW 2025 (Part 2)

By Becky Pender

26 May 2025

Rare insights

A tapestry of hope, advocacy & community: Day 2 of the NPUK AFC and IW 2025 (Part 1)

By admin

26 May 2025

Rare insights

Highlighting breakthroughs and collaboration: The NPUK Annual Family Conference & Interactive Workshop 2025

By admin

26 May 2025

Rare insights

Spinal cord stimulation: A new perspective for SMA research

By admin

23 May 2025

Rare insights

CureDuchenne appoints Brenda Wong, MD, as chief medical advisor to advance research and improve care for individuals with Duchenne and Becker muscular dystrophy

By admin

21 May 2025

Rare insights

Sickle Cell Disease Association of America names membership manager

By admin

21 May 2025

Rare insights

NHL All-Star Troy Terry and wife Dani to host CureDuchenne golf shootout on September 12–13, continuing a legacy of impact for Duchenne muscular dystrophy

By admin

21 May 2025

Rare insights

RARE Revolution expands its legacy with the launch of RARE Revolution insider

By admin

19 May 2025

Rare insights

Turning hope into action: The story of Happy Heart Week and a new era for Barth Syndrome

By admin

16 May 2025

Rare insights

One degree of separation from NF1

By admin

15 May 2025

Rare insights

NF1 One degree of separation campaign: Interactive body map

By admin

15 May 2025

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