Letters

Letters

“Glass siblings”: an unnecessary label

By CONTRIBUTOR

24 June 2024

RARE News

Little Moments Matter: a new film from Dravet Syndrome UK marks Dravet Syndrome Awareness Day

By admin

24 June 2024

Turning the tide for rare disease

The UK General Election 2024: Ensuring rare diseases remain a priority

By CONTRIBUTOR

24 June 2024

RARE caregiving

A road less travelled is no less worthy: A RARE mum’s reflections on special needs parenting

By CONTRIBUTOR

21 June 2024

RARE News

Cure GABA-A: A year of transformative impact in the GABAAR community

By admin

20 June 2024

RARE News

American Kidney Fund convenes Rare Kidney Disease Action Network to advocate change for patients with rare causes of kidney disease

By admin

18 June 2024

Charity & advocacy

A day in the life: Being diagnosed with Fanconi anaemia as a child and as an adult—what are the differences?

By CONTRIBUTOR

18 June 2024

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

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