Letters

Letters

Sarcoma Awareness Month: Sarcomas demand urgent awareness and education to prevent poor outcomes

By admin

24 July 2024

Turning the tide for rare disease

I am Celine Dion: The stiff person syndrome community reacts to the release of Dion’s documentary

By admin

22 July 2024

RARE News

The CMT Research Foundation’s 2024 Global CMT Research Convention to gather renowned scientific experts and patients to discuss status of treatments and cures for Charcot-Marie-Tooth (CMT) disease

By admin

19 July 2024

RARE News

NHL All-Star Ryan Getzlaf returns to the links for the 13th Annual Getzlaf Golf Shootout on September 13-14, benefiting CureDuchenne

By admin

17 July 2024

Industry Insights

Early access to medicines: A picture is worth a thousand words

By admin

17 July 2024

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 admin

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 admin

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 admin

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 admin

24 June 2024

RARE parenting

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

By admin

21 June 2024

RARE News

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

By admin

20 June 2024

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