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A day in the life
A day in the life
A day in the life: Cathy Moughton, PSPA helpline care navigator
By CONTRIBUTOR
24 May 2023
Charity & advocacy
GACI Global: circulating hope for families affected by a rare genetic disease that primarily affects the circulatory system
By CONTRIBUTOR
17 May 2023
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
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