Rare insights

Rare insights

PTC Therapeutics launches 9th annual STRIVE™ Awards Program to fund initiatives- benefitting the Duchenne muscular dystrophy community

By admin

18 January 2023

Rare insights

Wings of Fire: escaping the shadows of a rare disease that was undiagnosed for 25 years

By CONTRIBUTOR

11 January 2023

Rare insights

“Play the Rare Game for the Rare Ones” kicks off in Parma with the first Rugby match to raise awareness on rare diseases

By admin

6 January 2023

Rare insights

Rare × 2 = ? What having twins with a rare condition teaches you about people

By CONTRIBUTOR

4 January 2023

Rare insights

The Waiting Room Entertainment’s efforts to bridge the communication gap between patients, organizations and the medical community

By admin

3 January 2023

Rare insights

The Christmas ring

By CONTRIBUTOR

19 December 2022

Rare insights

Rare Diseases Lesotho Association: revolutionising rare disease care and raising awareness in Lesotho

By CONTRIBUTOR

15 December 2022

Rare insights

Rare Land: a Greek film shining a light on alpha mannosidosis and rare disease

By CONTRIBUTOR

12 December 2022

Rare insights

CureDuchenne raises more than $1.5 million at eighth annual Napa in Newport to help find a cure for Duchenne muscular dystrophy

By admin

8 December 2022

Rare insights

NFL players spotlight Sickle Cell Disease Association of America

By admin

7 December 2022

Rare insights

#DuchenneCan: celebrating what people with Duchenne CAN achieve

By CONTRIBUTOR

5 December 2022

Rare insights

Matt Hay: becoming a neurofibromatosis advocate and giving back to his community

By CONTRIBUTOR

1 December 2022

Rare insights

Jessica Massengale: living strong with scleroderma

By CONTRIBUTOR

24 November 2022

Rare insights

A celebration of 25 years in advocacy: Tanya Collin-Histed, CEO of the International Gaucher Alliance

By CONTRIBUTOR

18 November 2022

Rare insights

CATNAP® registry: collecting real-world data to enhance understanding of paediatric narcolepsy

By CONTRIBUTOR

17 November 2022

Rare insights

DEBRA launches £5m fundraising appeal to stop the pain of EB

By admin

16 November 2022

Rare insights

Winners of Gene People Awards 2022 announced

By admin

16 November 2022

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