Patient voice

Patient voice

Generalised arterial calcification of infancy (GACI): Ruben’s story

By CONTRIBUTOR

17 May 2023

RARE News

The Muscle Help Foundation launches 20th anniversary celebrations

By admin

16 May 2023

RARE News

Global Genes announces partnership with CureJM Foundation to expand support in rare disease community for mental health-related challenges

By admin

16 May 2023

RARE News

The Twin Run – supporting high-risk multiple birth parents and twin research

By admin

12 May 2023

Turning the tide for rare disease

Changing the landscape for the differently-abled community one smile at a time. Dr Sai Kaustuv is our RARE Inspiration

By CONTRIBUTOR

10 May 2023

RARE News

CureDuchenne partners with PicnicHealth to advance research and simplify patient experience by incorporating electronic health records into data-integrated biobank

By admin

5 May 2023

Industry Insights

COVID: Three years on—what has changed?

By CONTRIBUTOR

3 May 2023

RARE News

Specialty pharma expert adopts name of global parent to reflect breadth of offer that brings a rare and special perspective to the market

By admin

2 May 2023

A day in the life

A day in the life with hypokalemic periodic paralysis: Ralph Berthiaume

By CONTRIBUTOR

1 May 2023

RARE News

PIP-UK Poland syndrome charity launches new podcast series: What about PS? A Poland Syndrome Podcast

By admin

30 April 2023

RARE News

Survey shows 60% of people living with progressive supranuclear palsy and corticobasal degeneration are initially misdiagnosed

By admin

28 April 2023

Turning the tide for rare disease

Arianna’s Magic Boots: stamping out a taboo in children’s books

By CONTRIBUTOR

26 April 2023

RARE News

What is Quality of Life (QoL) for people living with a rare disease?

By admin

24 April 2023

Patient voice

Raymond: A “ray of sunshine” living with VAMP2

By CONTRIBUTOR

21 April 2023

Science & tech

Engaging patients to shape the research of the future

By CONTRIBUTOR

21 April 2023

RARE News

National health charity, CMTUK, is to host Charcot-Marie-Tooth conference on 21–22 April 2023

By admin

21 April 2023

Charity & advocacy

Ableism can hurt your confidence. Learn to use your voice to regain your personal power!

By CONTRIBUTOR

19 April 2023

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