Rare insights

Rare insights

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

By admin

28 March 2023

Rare insights

ANCA-associated vasculitis and its impact on patients and families

By Nicola Miller

28 March 2023

Rare insights

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

By CONTRIBUTOR

22 March 2023

Rare insights

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

By admin

17 March 2023

Rare insights

The Pharma Social Media Conference – 11th May – London

By admin

17 March 2023

Rare insights

Sickle Cell Disease Association of America to promote clinical trials

By admin

16 March 2023

Rare insights

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

By CONTRIBUTOR

15 March 2023

Rare insights

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

By CONTRIBUTOR

15 March 2023

Rare insights

“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

Rare insights

The new world of gene therapy: five questions answered

By CONTRIBUTOR

8 March 2023

Rare 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 insights

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

By admin

28 February 2023

Rare insights

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

By CONTRIBUTOR

27 February 2023

Rare insights

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

By admin

24 February 2023

Rare insights

Finding investment for gene therapies

By CONTRIBUTOR

22 February 2023

Rare insights

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 insights

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

By admin

17 February 2023

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