Charity & advocacy

Charity & advocacy

Davis Out of the Unknown: a family’s life with Koolen-de Vries Syndrome and their search for treatment

By CONTRIBUTOR

3 January 2024

RARE News

Sickle cell disease is not a joke

By admin

19 December 2023

RARE News

Sickle Cell Disease Association of America Inc. statement about gene therapy approval

By admin

15 December 2023

RARE Ramblings

Richard’s RARE Ramblings: Winter is coming… and I am ecstatic!

By CONTRIBUTOR

13 December 2023

RARE News

PSPA celebrates after receiving £164,000 National Lottery funding to help people living with PSP & CBD

By admin

13 December 2023

RARE News

Worthing couple take part in cooking challenge supported by celebrity chefs to raise funds for Muscular Dystrophy

By admin

8 December 2023

Science & tech

The Undiagnosed Diseases Network’s mission to eradicate the diagnostic odyssey: an interview with Sarah Marshall

By CONTRIBUTOR

6 December 2023

A day in the life

A day in the life: a medically complex condition that is as unpredictable as the weather

By CONTRIBUTOR

29 November 2023

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

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