Press releases

Press releases

Sickle Cell Disease Association of America to promote clinical trials

By admin

16 March 2023

Charity & advocacy

Teach RARE: a family’s rare disease journey continues by supporting caregivers with special education teaching and learning

By Joe Rumney

15 March 2023

Charity & advocacy

“Are we there yet?” Designing communication initiatives based on community needs – the Comms Working Group at SMA Europe

By admin

15 March 2023

Charity & advocacy

“Rare disease knows no borders”: EURORDIS-Rare Diseases Europe and US-based EveryLife Foundation for Rare Diseases team up against the global public health crisis of rare disease

By Geoff Case

8 March 2023

Press releases

RARE Youth Revolution announces new genetics and relationships project — ‘My life, my genetics’

By admin

28 February 2023

Science & tech

Optimising market access for rare disease products: insights from Craig Caceci

By Rebecca Pender

27 February 2023

Events

Operationalize: Expanded Access Programs Summit (March 21-23, 2023, Boston, MA)

By admin

24 February 2023

Press releases

Celebrating Rare Disease Day and 40 years of the Orphan Drug Act advocating for rare disease patients and their families

By admin

22 February 2023

Press releases

Project Sebastian is pleased to announce our second annual rare warrior 5 x 5 challenge!

By admin

17 February 2023

Press releases

Three small research grants awarded

By admin

17 February 2023

Press releases

CureDuchenne strengthens philanthropic business development with addition of vice president of corporate and donor relations

By admin

16 February 2023

Turning the tide for rare disease

Aaron Jackson: raising awareness of organ donation, and bringing hope to the transplant community

By admin

15 February 2023

Press releases

Sure announced as headline sponsor for Parallel Windsor 2023

By admin

13 February 2023

RARE Ramblings

Richard’s RARE Ramblings: FEAR!

By admin

8 February 2023

Press releases

Shining the light on tube feeding

By admin

5 February 2023

Turning the tide for rare disease

A new year brings new opportunities: Global Genes – supporting patients, caregivers, advocates and organisations

By admin

1 February 2023

Press releases

From SMA Europe: We are excited to announce that our OdySMA project is going live!

By admin

1 February 2023

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