A day in the life

A day in the life

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

By CONTRIBUTOR

1 May 2023

RARE News

PIP-UK Poland syndrome charity launches new podcast series: What about PS? A Poland Syndrome Podcast

By admin

30 April 2023

RARE News

Survey shows 60% of people living with progressive supranuclear palsy and corticobasal degeneration are initially misdiagnosed

By admin

28 April 2023

Turning the tide for rare disease

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

By CONTRIBUTOR

26 April 2023

RARE News

What is Quality of Life (QoL) for people living with a rare disease?

By admin

24 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

RARE News

National health charity, CMTUK, is to host Charcot-Marie-Tooth conference on 21–22 April 2023

By admin

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

RARE News

May Movement Challenge – Free adaptive and accessible online exercise

By admin

17 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

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

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