RARE News

RARE News

World Duchenne Organization announces Accredited Duchenne Centers Programme

By admin

7 October 2022

RARE News

Sickle Cell Disease Association holds 50th annual national convention virtually

By admin

5 October 2022

Turning the tide for rare disease

CMTC-OVM: improving the lives of people with blood vessel abnormalities (vascular malformations)

By CONTRIBUTOR

3 October 2022

Medical

Sanius Health’s mission to personalise care for people with sickle cell disease—using advanced wearable technology

By CONTRIBUTOR

29 September 2022

Charity & advocacy

Governing with Purpose: How to lead a brilliant board – a guide for charity trustees

By CONTRIBUTOR

29 September 2022

RARE News

American Kidney Fund’s Unknown Causes of Kidney Disease Coalition set to advance policies on rare kidney diseases

By admin

26 September 2022

Science & tech

Merging the metaverse and the rare disease community: join the conversation

By CONTRIBUTOR

22 September 2022

RARE News

The Dash Alliance and RARE Revolution Magazine – levelling up for RARE

By admin

21 September 2022

Medical

The RAPSODI study: an online study to understand the association between the Gaucher-causing gene and Parkinson’s

By CONTRIBUTOR

14 September 2022

Turning the tide for rare disease

Being a strong father does not mean staying silent in times of trauma

By CONTRIBUTOR

14 September 2022

Turning the tide for rare disease

A ‘bullhorn in stilettoes’: Tisha Foster’s unique approach to raising awareness of hidden disabilities

By CONTRIBUTOR

12 September 2022

Patient voice

Passing on a rare disease: a RARE mother’s journey from ‘blameless guilt’ to joy

By CONTRIBUTOR

5 September 2022

RARE News

The 2022 Jeans For Genes grant programme is now open and inviting applications

By admin

1 September 2022

RARE News

Sickle Cell Disease Association celebrates National Sickle Cell Awareness Month

By admin

31 August 2022

Turning the tide for rare disease

Ms Colorado America 2022: two-time aneurysm survivor and a champion for cardiovascular disease prevention

By CONTRIBUTOR

31 August 2022

Turning the tide for rare disease

Jeans for Genes: raising awareness and funds to help people living with life-altering genetic conditions

By CONTRIBUTOR

29 August 2022

RARE News

Operationalise: Early Access Programmes Summit Europe 18-20th October 2022

By admin

24 August 2022

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