Rare insights

Rare insights

First U.S. national genomic newborn screening initiative launched with $14.4 million NIH Award

By admin

13 October 2025

Rare insights

Kabuki Syndrome Foundation appoints new Executive Director as organisation expands leadership to drive research progress

By admin

13 October 2025

Rare insights

To the ends of the earth – a journey for Addison’s disease awareness

By CONTRIBUTOR

7 October 2025

Rare insights

SMA Europe launches new clinical trials finder to support access to clinical trials and accelerate progress in SMA treatment

By admin

30 September 2025

Rare insights

EB charity DEBRA appoints new Chair of Trustees

By admin

29 September 2025

Rare insights

CureDuchenne announces Fuerza 2025: A landmark conference in Mexico City on October 25 focused on Duchenne and Becker muscular dystrophy

By admin

29 September 2025

Rare insights

My unexpected journey: life with a rare liver tumour

By CONTRIBUTOR

24 September 2025

Rare insights

HBA Support launch Brain Aneurysms and Beyond Podcast

By admin

22 September 2025

Rare insights

Sickle Cell Disease Association of America to hold convention in Chicago

By admin

22 September 2025

Rare insights

14th Annual CureDuchenne Golf Shootout hosted by Dani and Troy Terry raises over $550,000

By admin

22 September 2025

Rare insights

Top North American aortic-awareness organisations stand together to save lives during Aortic Dissection Awareness Week (September 14 – 20, 2025)

By admin

15 September 2025

Rare insights

Fundraiser turns to music to raise awareness of rare disease

By admin

15 September 2025

Rare insights

Transforming patient support for people living with rare diseases

By CONTRIBUTOR

15 September 2025

Rare insights

Finalists revealed for Little Moments Matter Awards celebrating professionals supporting those with rare form of epilepsy

By admin

12 September 2025

Rare insights

Vascular Voice Network launches to unite organisations across the vascular health landscape

By admin

12 September 2025

Rare insights

ARRE Foundation launches new website for ASXL community

By admin

10 September 2025

Rare insights

Rare diseases become “not-so-rare” within a global R&D and treatment strategy

By Paul Kidwell

10 September 2025

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