Charity & advocacy

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 CONTRIBUTOR

8 March 2023

Industry Insights

The new world of gene therapy: five questions answered

By CONTRIBUTOR

8 March 2023

Industry Insights

Red tape is ruining the potential of partnerships between patient groups and the pharmaceutical industry – it’s time for change

By CONTRIBUTOR

1 March 2023

RARE News

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 CONTRIBUTOR

27 February 2023

RARE News

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

By admin

24 February 2023

Industry Insights

Finding investment for gene therapies

By CONTRIBUTOR

22 February 2023

RARE News

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

RARE News

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

By admin

17 February 2023

RARE News

Three small research grants awarded

By admin

17 February 2023

RARE News

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 CONTRIBUTOR

15 February 2023

RARE News

Sure announced as headline sponsor for Parallel Windsor 2023

By admin

13 February 2023

RARE Ramblings

Richard’s RARE Ramblings: FEAR!

By CONTRIBUTOR

8 February 2023

RARE News

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 CONTRIBUTOR

1 February 2023

Industry Insights

“Developing positive change in how we diagnose, treat and care for patients with a rare disease.” Rhetoric or reality?

By CONTRIBUTOR

1 February 2023

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