Charity & advocacy

Charity & advocacy

Living with muscular dystrophy in Nepal

By admin

13 December 2021

RARE News

Sickle Cell Disease Association of America names Regina Hartfield CEO

By admin

10 December 2021

Patient voice

Caring for his children with VICI syndrome: Muzaffar Anjum’s story

By admin

8 December 2021

Patient voice

“Do you hear me?”

By admin

3 December 2021

Medical

Seeing Red

By admin

26 November 2021

Patient voice

My scars tell a story

By admin

24 November 2021

Charity & advocacy

A new UK charity launches to support those impacted by Glut1DS

By admin

12 November 2021

Patient voice

Hannah, Me and NCSE

By admin

10 November 2021

RARE News

Cambridge charity launches crowdfunding campaign to raise £30,000 for the first global AKU registry.

By admin

9 November 2021

Patient voice

Cavernous malformation and the Breaking Barriers Initiative

By admin

5 November 2021

Patient voice

Please don’t call my son a patient

By admin

3 November 2021

RARE News

What is HH? Carrie Fulcher tells her story of finally discovering that she had a hypothalamic hamartoma

By admin

30 October 2021

RARE News

Rare Community Network and Medics4RareDisease platform the underrepresented voices of the rare disease community for NHS England & Improvement meeting

By admin

26 October 2021

RARE News

Research Tools Matching Grant Program now accepting applications!

By admin

25 October 2021

Charity & advocacy

October is CMT awareness month in the UK

By admin

22 October 2021

Charity & advocacy

Applications open for Duchenne Patient Academy 2021

By admin

18 October 2021

Weblinks and references

Digital health revolution and its transformative potential for rare diseases – WEBLINKS AND REFERENCES

By admin

13 October 2021

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