Press releases

American Kidney Fund will host cystinosis camp as part of national virtual camp for children and teens with kidney disease

By admin

25 May 2023

A day in the life

A day in the life: Cathy Moughton, PSPA helpline care navigator

By admin

24 May 2023

Patient voice

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

By admin

17 May 2023

Charity & advocacy

GACI Global: circulating hope for families affected by a rare genetic disease that primarily affects the circulatory system 

By admin

17 May 2023

Press releases

The Muscle Help Foundation launches 20th anniversary celebrations

By admin

16 May 2023

Press releases

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

By admin

16 May 2023

Press releases

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 admin

10 May 2023

Press releases

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 admin

3 May 2023

Press releases

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 admin

1 May 2023

Press releases

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 admin

26 April 2023

Press releases

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

By admin

24 April 2023

Press releases

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

By admin

21 April 2023

Science & tech

Engaging patients to shape the research of the future

By admin

21 April 2023