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RDD Spotlight edition - Hereditary angioedema
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Charity & advocacy
Charity & advocacy
The incalculable costs of rare diseases for individuals, families and society
By admin
29 March 2023
Charity & advocacy
Teach RARE: a family’s rare disease journey continues by supporting caregivers with special education teaching and learning
By Joe Rumney
15 March 2023
Charity & advocacy
“Are we there yet?” Designing communication initiatives based on community needs – the Comms Working Group at SMA Europe
By admin
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 Geoff Case
8 March 2023
Charity & advocacy
#DuchenneCan: celebrating what people with Duchenne CAN achieve
By Rebecca Pender
5 December 2022
Charity & advocacy
Governing with Purpose: How to lead a brilliant board – a guide for charity trustees
By Rebecca Pender
29 September 2022
Charity & advocacy
ANGEL AID Unveils Raregivers™ Global Mental Health Initiative for Caregivers, Patients and Professionals
By Rebecca Pender
12 July 2022
Charity & advocacy
Married on a mountain with a collapsed lung
By Rebecca Pender
23 June 2022
Charity & advocacy
Maryland governor proclaims June 11 is KBG syndrome awareness day
By Rebecca Pender
6 June 2022
Charity & advocacy
Let’s Play Fair—Disability Charity Scope launches accessible play campaign which demands that every child has an equal right to play
By Rebecca Pender
3 June 2022
Charity & advocacy
Rare Diseases Organization Nepal holds inaugural meeting to formalise its mission, vision, values and main objectives
By Rebecca Pender
23 May 2022
Charity & advocacy
The Vascular Birthmarks Foundation, Dr. Giacomo Colletti, Laserplast, and Candela collaborate to provide pro bono laser treatments
By Rebecca Pender
10 March 2022
Charity & advocacy
Living with muscular dystrophy in Nepal
By Rebecca Pender
13 December 2021
Charity & advocacy
A new UK charity launches to support those impacted by Glut1DS
By Rebecca Pender
12 November 2021
Charity & advocacy
October is CMT awareness month in the UK
By Rebecca Pender
22 October 2021
Charity & advocacy
Applications open for Duchenne Patient Academy 2021
By Rebecca Pender
18 October 2021
Charity & advocacy
Celebrating a year of mental health support for men affected by rare conditions!
By Rebecca Pender
30 June 2021
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