Rare insights

Rare insights

From navigating a system that was not built for people with rare diseases, to working to change that system from both sides

By CONTRIBUTOR

24 August 2026

Rare insights

Muscle Help Foundation becomes title partner of South East Powerchair Football League

By admin

21 August 2026

Rare insights

Global EB Taskforce at Hever Castle: shaping the future of DEBRA’s research strategy

By CONTRIBUTOR

20 August 2026

Rare insights

Huntington’s disease shaped my life—but I have hope for the future

By CONTRIBUTOR

19 August 2026

Rare insights

On Coats’ Disease Awareness Day, foundation announces groundbreaking research effort to develop first validated animal model for the rare eye disease

By admin

17 August 2026

Rare insights

RARE Drug Development Symposium marks 10th anniversary with dedicated pitch sessions and the theme and call to action to align advocates, science and industry

By admin

12 August 2026

Rare insights

Koolen-de Vries Syndrome Foundation and Children’s Hospital Colorado launch first U.S. multidisciplinary clinic, titled the Kool Klinic

By admin

12 August 2026

Rare insights

Beyond the boardroom: how the Lions’ Den is redefining patient-industry dialogue at the International PBC Summit 2026

By Becky Pender, RARE Revolution

12 August 2026

Rare insights

National quality standard awarded to PSPA in recognition of outstanding volunteer support

By admin

10 August 2026

Rare insights

Wish you were here! Kidney failure, travel and me

By Joe Rumney, RARE Revolution

10 August 2026

Rare insights

Jack McGovern Coats’ Disease Foundation celebrates 20 years of hope, progress, and the pursuit of a cure

By admin

7 August 2026

Rare insights

Beyond childhood: why access to SMA treatment in Ukraine remains a lottery

By CONTRIBUTOR

7 August 2026

Rare insights

“It’s a marathon, not a sprint”: learning to live with myositis

By Nicola Miller, RARE Revolution

1 August 2026

Rare insights

Staying wild: has the sun set on the zebra mascot?

By Nicola Miller, RARE Revolution

29 July 2026

Rare insights

The power of community: inside the unique culture of the International PBC Summit 2026

By Becky Pender, RARE Revolution

29 July 2026

Rare insights

How a patient advocacy group transformed one of the world’s smallest rare disease communities into a global research network

By admin

27 July 2026

Rare insights

The Lilly and Blair Foundation announces inaugural Strategic Research Grant Awards

By admin

27 July 2026

1 2 3 … 49 Next »