Charity & advocacy

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

Charity & advocacy

Ableism can hurt your confidence. Learn to use your voice to regain your personal power!

By admin

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 admin

12 April 2023

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

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