Turning the tide for rare disease

Turning the tide for rare disease

A mother’s mission to raise awareness of Bardet-Biedl syndrome and promote effective partnerships between carers and medical professionals

By rpender

30 May 2022

Turning the tide for rare disease

The Vascular Birthmarks Foundation: revolutionising awareness levels, access to treatments and physician education

By rpender

26 May 2022

Editor's picks

Saarah’s Foundation: a fitting legacy to Saarah Ahmed—daughter, sister, star student, aspiring neuroscientist, Miss Universe GB contestant and kEDS warrior

By rpender

20 May 2022

Turning the tide for rare disease

The first step in advocacy is believing in the power of your own voice

By rpender

16 May 2022

Turning the tide for rare disease

Beat SCAD’s passionate and persistent quest for answers for the spontaneous coronary artery dissection community

By rpender

9 May 2022

Turning the tide for rare disease

The Big Sunflower Project

By rpender

2 May 2022

Turning the tide for rare disease

A multi-centre registry for idiopathic pulmonary capillaritis

By rpender

25 April 2022

Turning the tide for rare disease

Project Sebastian: a safe space for the rare disease community to talk, listen and connect

By rpender

20 April 2022

Turning the tide for rare disease

Rare Patient Voice: helping patients and caregivers share their voices

By rpender

14 April 2022

Turning the tide for rare disease

The Akari Foundation – a light of hope for people with DMD in the Hispanic community

By rpender

11 April 2022

Turning the tide for rare disease

Riding the wave of medical research to find a cure for Ellie

By rpender

6 April 2022

Turning the tide for rare disease

Time for action

By rpender

28 March 2022

Turning the tide for rare disease

The Global Genes Rare Disease Equity, Diversity and Inclusion Report: the glimmers of hope

By rpender

23 March 2022

Turning the tide for rare disease

Libmeldy gene therapy offers a lifeline to children with leukodystrophy and gives hope to the rare disease community

By rpender

23 March 2022

Turning the tide for rare disease

Turning the tide for adult polyglucosan body disease (APBD)

By rpender

16 March 2022

Turning the tide for rare disease

The Global Genes Rare Disease Diversity, Equity and Inclusion Report: the challenges

By rpender

16 March 2022

Turning the tide for rare disease

The healing power of storytelling

By rpender

14 March 2022

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