Rare insights

Rare insights

Calling for implementation of neonatal screening programmes following the WHO resolution on rare diseases

By Becky Pender

28 June 2025

Rare insights

A milestone moment: The CPA Research Foundation hosts its first in-person retreat

By admin

26 June 2025

Rare insights

Former NFL, University of Kentucky football star, Art Still, working to shine a spotlight on rare heart disease

By CONTRIBUTOR

25 June 2025

Rare insights

New awards launched to celebrate unsung heroes supporting families living with Dravet Syndrome

By admin

23 June 2025

Rare insights

Art in isolation: A journey of healing and resistance

By CONTRIBUTOR

22 June 2025

Rare insights

Climbing in Heels

By admin

19 June 2025

Rare insights

Animation to aid diagnosis of corticobasal degeneration

By admin

18 June 2025

Rare insights

New research reveals severe psychological distress experienced by families caring for a child with Dravet Syndrome

By admin

18 June 2025

Rare insights

A mother’s journey to change the medical landscape for son’s rare disease

By admin

18 June 2025

Rare insights

Fighting for Jackson: A mother’s journey to empower families living with Angelman syndrome

By admin

13 June 2025

Rare insights

The rare disease foundation journey

By admin

11 June 2025

Rare insights

A movement born from silence: The global mission to treat CTNNB1 syndrome

By admin

11 June 2025

Rare insights

Three ways AI is changing paediatric genomic medicine

By admin

9 June 2025

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

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