Patient voice

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

Medical

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

By CONTRIBUTOR

4 April 2022

RARE News

Global non-profit CureDuchenne announces futures national conference for the Duchenne muscular dystrophy community to be held May 27–29

By admin

1 April 2022

Patient voice

MNGIE: Verity Grainger’s mission to raise funds for a life-saving therapy

By CONTRIBUTOR

30 March 2022

RARE News

Mental health and care navigation top list of needs for people living with neurodegenerative diseases at Adira Foundation congress

By admin

28 March 2022

Turning the tide for rare disease

Time for action

By CONTRIBUTOR

28 March 2022

Turning the tide for rare disease

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

By CONTRIBUTOR

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 CONTRIBUTOR

23 March 2022

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