Charity & advocacy

Charity & advocacy

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

By CONTRIBUTOR

29 March 2023

RARE News

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 editor

28 March 2023

Turning the tide for rare disease

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

By CONTRIBUTOR

22 March 2023

RARE News

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

By admin

17 March 2023

RARE News

The Pharma Social Media Conference – 11th May – London

By admin

17 March 2023

RARE News

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 CONTRIBUTOR

15 March 2023

Charity & advocacy

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

By CONTRIBUTOR

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 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

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