RARE News

RARE News

Myhre Syndrome Foundation hosts inaugural in-person conference, offering hope and support to the community

By admin

7 June 2024

Turning the tide for rare disease

Accelerating treatment access in the United States through financial assistance, education and advocacy

By CONTRIBUTOR

6 June 2024

RARE News

Country music legend Alan Jackson’s ‘Last Call’ tour to have a dual legacy

By admin

6 June 2024

RARE News

Global Liver Institute applauds US representative Nydia Velázquez’s reintroduction of the Liver Illness, Visibility, Education and Research Act (LIVER Act)

By admin

4 June 2024

RARE News

UK charity backs calls for improved support for carers

By admin

4 June 2024

Charity & advocacy

Supercharging advocacy in Latin America for Hirschsprung’s disease and anorectal malformation

By CONTRIBUTOR

31 May 2024

Letters

When children take their first breath, their care is fully funded. Why isn’t it when they take their last?

By CONTRIBUTOR

31 May 2024

Charity & advocacy

Huntington’s disease (HD) was not part of my plans, but it sure has a plan for me

By CONTRIBUTOR

29 May 2024

RARE News

Families fight for rare epilepsy breakthrough and find it through a unique collaboration

By admin

28 May 2024

RARE News

Pop-up hospital gives chronically ill kids a summer camp

By admin

24 May 2024

RARE News

SMA Europe launches “real-life stories” to show how access to treatment and care impacts people living with spinal muscular atrophy

By admin

22 May 2024

RARE News

The Oxford-Harrington Rare Disease Centre announces newly funded grant award programmes to develop new therapies for Friedreich’s ataxia

By admin

22 May 2024

Turning the tide for rare disease

A rare dad’s journey: Inspiring change for the rare disease community in Rwanda

By CONTRIBUTOR

22 May 2024

RARE News

DEBRA UK supports the Burma Skincare Initiative at the Chelsea Flower Show

By admin

21 May 2024

Patient voice

How CLN2 Batten disease changed our life: “A Mother’s Love”

By CONTRIBUTOR

16 May 2024

Industry Insights

What are the next steps for rare disease innovation in the United Kingdom?

By CONTRIBUTOR

15 May 2024

RARE News

Global nonprofit CureDuchenne to host FUTURES National Conference for the Duchenne and Becker muscular dystrophy community (May 23-26, Orlando, Florida)

By admin

14 May 2024

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