A day in the life

A day in the life with Behcet’s disease: Pamela Price

By admin

29 March 2023

Charity & advocacy

The incalculable costs of rare diseases for individuals, families and society

By admin

29 March 2023

Press releases

Rare disease warrior Pamela Price ran 340 miles from LA to Las Vegas with Team Unlimited Women

By admin

28 March 2023

RARE REV-inar

ANCA-associated vasculitis and its impact on patients and families

By admin

28 March 2023

Turning the tide for rare disease

Lea Jabre: helping to lift the voice of the stiff person community

By admin

22 March 2023

Events

The Patient Centricity & Engagement Conference – 10th May – London

By admin

17 March 2023

Events

The Pharma Social Media Conference – 11th May – London

By admin

17 March 2023

Press releases

Sickle Cell Disease Association of America to promote clinical trials

By admin

16 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

Industry Insights

The new world of gene therapy: five questions answered

By admin

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 admin

1 March 2023

Press releases

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

By admin

28 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

Industry Insights

Finding investment for gene therapies

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