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RARE News
RARE News
The Student Voice Prize: an international essay competition raising the profile of rare disease
By admin
13 October 2022
Turning the tide for rare disease
What I learned raising a son with haemophilia: Stormy’s story
By CONTRIBUTOR
12 October 2022
RARE News
World Orphan Drug Congress 2022 – Europe’s most exciting orphan drug event
By admin
10 October 2022
RARE News
World Duchenne Organization announces Accredited Duchenne Centers Programme
By admin
7 October 2022
RARE News
Sickle Cell Disease Association holds 50th annual national convention virtually
By admin
5 October 2022
Turning the tide for rare disease
CMTC-OVM: improving the lives of people with blood vessel abnormalities (vascular malformations)
By CONTRIBUTOR
3 October 2022
Medical
Sanius Health’s mission to personalise care for people with sickle cell disease—using advanced wearable technology
By CONTRIBUTOR
29 September 2022
Charity & advocacy
Governing with Purpose: How to lead a brilliant board – a guide for charity trustees
By CONTRIBUTOR
29 September 2022
RARE News
American Kidney Fund’s Unknown Causes of Kidney Disease Coalition set to advance policies on rare kidney diseases
By admin
26 September 2022
Science & tech
Merging the metaverse and the rare disease community: join the conversation
By CONTRIBUTOR
22 September 2022
RARE News
The Dash Alliance and RARE Revolution Magazine – levelling up for RARE
By admin
21 September 2022
Medical
The RAPSODI study: an online study to understand the association between the Gaucher-causing gene and Parkinson’s
By CONTRIBUTOR
14 September 2022
Turning the tide for rare disease
Being a strong father does not mean staying silent in times of trauma
By CONTRIBUTOR
14 September 2022
Turning the tide for rare disease
A ‘bullhorn in stilettos’: Tisha Foster’s unique approach to raising awareness of hidden disabilities
By CONTRIBUTOR
12 September 2022
Patient voice
Passing on a rare disease: a RARE mother’s journey from ‘blameless guilt’ to joy
By CONTRIBUTOR
5 September 2022
RARE News
The 2022 Jeans For Genes grant programme is now open and inviting applications
By admin
1 September 2022
RARE News
Sickle Cell Disease Association celebrates National Sickle Cell Awareness Month
By admin
31 August 2022
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