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 CONTRIBUTOR

30 May 2022

Turning the tide for rare disease

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

By CONTRIBUTOR

26 May 2022

Charity & advocacy

Rare Diseases Organization Nepal holds inaugural meeting to formalise its mission, vision, values and main objectives

By CONTRIBUTOR

23 May 2022

Turning the tide for rare disease

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

By CONTRIBUTOR

20 May 2022

Science & tech

Sure, you’ve heard about GNEM. But do you know about the Bulgarian variant?

By CONTRIBUTOR

19 May 2022

Turning the tide for rare disease

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

By CONTRIBUTOR

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 CONTRIBUTOR

9 May 2022

Patient voice

A story of heartbreak and hope: Juju’s journey with CLN2 Batten disease

By CONTRIBUTOR

9 May 2022

Science & tech

Building a bridge between patient and pharma: the CMT story

By CONTRIBUTOR

9 May 2022

Turning the tide for rare disease

The Big Sunflower Project

By CONTRIBUTOR

2 May 2022

Patient voice

The rare and wonderful opportunity of parenting a child with a RARE condition

By CONTRIBUTOR

29 April 2022

Turning the tide for rare disease

A multi-centre registry for idiopathic pulmonary capillaritis

By CONTRIBUTOR

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 CONTRIBUTOR

20 April 2022

Turning the tide for rare disease

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

By CONTRIBUTOR

11 April 2022

Turning the tide for rare disease

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

By CONTRIBUTOR

6 April 2022

Patient voice

Redefine: Max Feinstein’s concept album inspired by his life with haemophilia

By CONTRIBUTOR

4 April 2022

Medical

What can we learn from European rare disease policies to future-proof our health systems?

By CONTRIBUTOR

4 April 2022