Charity & advocacy

Charity & advocacy

An advocate’s fight across the finish line: learning to live with multiple rare conditions and the trauma of the Boston Marathon bombing

By CONTRIBUTOR

12 April 2023

RARE Ramblings

Richard’s RARE Ramblings: Why?

By CONTRIBUTOR

12 April 2023

RARE News

8th annual RARE Drug Development Symposium – May 1-3, 2023

By admin

7 April 2023

Patient voice

Going great lengths: a mother and son’s journey with fibular hemimelia

By CONTRIBUTOR

5 April 2023

A day in the life

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

By CONTRIBUTOR

29 March 2023

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

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