Rare insights

Rare insights

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

By admin

30 April 2023

Rare insights

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

By admin

28 April 2023

Rare insights

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

By CONTRIBUTOR

26 April 2023

Rare insights

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

By admin

24 April 2023

Rare insights

Raymond: A “ray of sunshine” living with VAMP2

By CONTRIBUTOR

21 April 2023

Rare insights

Engaging patients to shape the research of the future

By CONTRIBUTOR

21 April 2023

Rare insights

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

By admin

21 April 2023

Rare insights

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

By CONTRIBUTOR

19 April 2023

Rare insights

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

By CONTRIBUTOR

19 April 2023

Rare insights

May Movement Challenge – Free adaptive and accessible online exercise

By admin

17 April 2023

Rare insights

The GLISTEN trial

By CONTRIBUTOR

14 April 2023

Rare insights

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 insights

Richard’s RARE Ramblings: Why?

By CONTRIBUTOR

12 April 2023

Rare insights

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

By admin

7 April 2023

Rare insights

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

By CONTRIBUTOR

5 April 2023

Rare insights

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

By CONTRIBUTOR

29 March 2023

Rare insights

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

By CONTRIBUTOR

29 March 2023

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