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Charity & advocacy
Charity & advocacy
A Rare Find: upcoming comedy short wants to create conversation around newborn screening
By CONTRIBUTOR
27 September 2023
Charity & advocacy
Mitochondrial disease awareness week: let’s move the needle towards effective treatments and cures
By CONTRIBUTOR
20 September 2023
Charity & advocacy
Creld1 Warriors—bringing the scientific and parent community together
By CONTRIBUTOR
2 August 2023
Charity & advocacy
Connie Montgomery’s late diagnosis with two rare diseases: factor VII deficiency and pemphigus vulgaris
By CONTRIBUTOR
19 July 2023
Charity & advocacy
Dee and Nadia’s journey with Kawasaki disease
By CONTRIBUTOR
21 June 2023
Charity & advocacy
Global Genes and Cure JM Foundation: expanding mental health support for the rare disease community
By CONTRIBUTOR
7 June 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
Charity & advocacy
Ableism can hurt your confidence. Learn to use your voice to regain your personal power!
By CONTRIBUTOR
19 April 2023
Charity & advocacy
An advocate’s fight across the finish line: learning to live with multiple rare conditions and the trauma of the Boston Marathon bombing
By CONTRIBUTOR
12 April 2023
Charity & advocacy
The incalculable costs of rare diseases for individuals, families and society
By CONTRIBUTOR
29 March 2023
Charity & advocacy
Teach RARE: a family’s rare disease journey continues by supporting caregivers with special education teaching and learning
By CONTRIBUTOR
15 March 2023
Charity & advocacy
“Are we there yet?” Designing communication initiatives based on community needs – the Comms Working Group at SMA Europe
By CONTRIBUTOR
15 March 2023
Charity & advocacy
“Rare disease knows no borders”: EURORDIS-Rare Diseases Europe and US-based EveryLife Foundation for Rare Diseases team up against the global public health crisis of rare disease
By CONTRIBUTOR
8 March 2023
Charity & advocacy
#DuchenneCan: celebrating what people with Duchenne CAN achieve
By CONTRIBUTOR
5 December 2022
Charity & advocacy
Governing with Purpose: How to lead a brilliant board – a guide for charity trustees
By CONTRIBUTOR
29 September 2022
Charity & advocacy
ANGEL AID Unveils Raregivers™ Global Mental Health Initiative for Caregivers, Patients and Professionals
By CONTRIBUTOR
12 July 2022
Charity & advocacy
Married on a mountain with a collapsed lung
By CONTRIBUTOR
23 June 2022
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