Charity & advocacy

Charity & advocacy

Thoughts into Action: What is quality of life as defined by people living with inherited metabolic disorders?

By CONTRIBUTOR

22 November 2023

RARE News

CureDuchenne raises more than $1.3 million at ninth annual Napa in Newport to help find a cure for Duchenne muscular dystrophy

By admin

16 November 2023

Charity & advocacy

Shining a light on Smith-Magenis syndrome

By CONTRIBUTOR

15 November 2023

Science & tech

What is a flare in Sjögren’s? TREND Community’s innovative use of artificial intelligence to find answers for the community

By CONTRIBUTOR

8 November 2023

RARE News

Exciting news: $100,000 in funding for Myhre syndrome research projects

By admin

7 November 2023

RARE News

Rare Stories initiative illuminates lives in Northern Ireland rare disease community

By admin

2 November 2023

Patient voice

Fostering a positive mind and body

By CONTRIBUTOR

1 November 2023

RARE News

Pilbara Rare Care Centre to open in remote Western Australia

By admin

31 October 2023

RARE News

CureDuchenne welcomes new executive director, vice president of medical affairs, and board members

By admin

25 October 2023

Patient voice

Let’s talk about sex, baby!

By CONTRIBUTOR

25 October 2023

Charity & advocacy

Do you work for a compassionate employer?

By CONTRIBUTOR

18 October 2023

Industry Insights

Together4RD: making ERN-industry collaboration a key pillar of the future in the rare disease research ecosystem

By CONTRIBUTOR

11 October 2023

A day in the life

A day in the life: navigating our way through the labyrinth of a newly discovered disease

By CONTRIBUTOR

9 October 2023

RARE News

Arthur Suckow, former co-founder and chief executive officer of DTx Pharma, joins CMT Research Foundation board of directors

By admin

5 October 2023

Patient voice

Joshua Ruff: a journey of transformation through faith, family and farming

By CONTRIBUTOR

4 October 2023

RARE News

NHL all-star Ryan Getzlaf and CureDuchenne raise more than $500,000 at 12th Annual Getzlaf Golf Shootout

By admin

29 September 2023

RARE News

CMTUK charity is one of the first UK charities to move from subscription-based membership to a discretionary donation-based charity

By admin

28 September 2023

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