RARE News

RARE News

Challenges and priorities for the PSP and CBD community: Insights from Mark Jackson

By admin

12 July 2024

RARE News

The CMT Research Foundation to launch grant program to support young investigators working on CMT

By admin

12 July 2024

Charity & advocacy

Bridging gaps in care: How independent charitable patient assistance organisations support underserved populations

By CONTRIBUTOR

10 July 2024

RARE News

Concerned stakeholders issue call to action on the implementation of the EU Joint Clinical Assessment for ATMPs

By admin

9 July 2024

Industry Insights

What can rare disease services learn from oncology services? A personal reflection

By CONTRIBUTOR

1 July 2024

RARE News

International Neonatal Screening Day: A call for global implementation of neonatal screening programmes

By admin

28 June 2024

RARE News

PSPA event brings together families affected by progressive supranuclear palsy and corticobasal degeneration

By admin

25 June 2024

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

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