RARE News

RARE News

Advocacy in Hemophilia Series: Event 1: Equity of Access in Hemophilia

By admin

12 May 2022

RARE News

Conference to pave the way for the next decade of rare diseases

By admin

11 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

RARE News

National health charity CMTUK is to host annual conference on May 6th-7th

By admin

29 April 2022

Patient voice

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

By CONTRIBUTOR

29 April 2022

RARE News

Undiagnosed Day 2022

By admin

28 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

RARE News

California mental health initiative to fight hidden sickle cell symptoms

By admin

8 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

Rare insights

Medics4RareDiseases joins forces with Bionical Emas to launch new online training

By admin

5 April 2022

Patient voice

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

By CONTRIBUTOR

4 April 2022

Rare insights

National charity MPS Society encourages the public to spread awareness about rare genetic disease

By admin

4 April 2022

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