A day in the life

A day in the life with hypokalemic periodic paralysis: Ralph Berthiaume

By CONTRIBUTOR

1 May 2023

Turning the tide for rare disease

Arianna’s Magic Boots: stamping out a taboo in children’s books

By CONTRIBUTOR

26 April 2023

Patient voice

Raymond: A “ray of sunshine” living with VAMP2

By CONTRIBUTOR

21 April 2023

Science & tech

Engaging patients to shape the research of the future

By CONTRIBUTOR

21 April 2023

Charity & advocacy

Ableism can hurt your confidence. Learn to use your voice to regain your personal power!

By CONTRIBUTOR

19 April 2023

Turning the tide for rare disease

FOP Friends: celebrating a decade of support for the fibrodysplasia ossificans progressiva community

By CONTRIBUTOR

19 April 2023

Medical

The GLISTEN trial

By CONTRIBUTOR

14 April 2023

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

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

Turning the tide for rare disease

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

By CONTRIBUTOR

22 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