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Press releases

Raising awareness and celebrating people with craniofacial differences

By Rebecca Pender
24 January 2023

Editor's picks

RARE Revolution Magazine publishes new impact report – The impact of RARE diseases on sibling experience

By Rebecca Pender
23 January 2023

Events

Rare Disease Innovation & Partnership Summit

By Rebecca Pender
19 January 2023

Turning the tide for rare disease

Barriers to care in sickle cell disease: the reflections of La’Shardae Scott, social worker and RARE mother

By Rebecca Pender
18 January 2023

Events

Cell & Gene Therapy Summit 2023

By Rebecca Pender
18 January 2023

Press releases

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

By Rebecca Pender
18 January 2023

Patient voice

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

By Rebecca Pender
11 January 2023

Press releases

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

By Rebecca Pender
6 January 2023

Turning the tide for rare disease

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

By Rebecca Pender
4 January 2023

Press releases

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

By Rebecca Pender
3 January 2023

Press releases

Blueprint Medicines reports clinical data highlighting leadership in developing targeted treatment options for patients with systemic mastocytosis

By Rebecca Pender
22 December 2022

Press releases

Zynerba Pharmaceuticals announces publication of data from phase 3 CONNECT-FX study of Zygel™ in the Journal of Neurodevelopmental Disorders

By Rebecca Pender
20 December 2022

Turning the tide for rare disease

The Christmas ring

By Rebecca Pender
19 December 2022

Turning the tide for rare disease

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

By Rebecca Pender
15 December 2022

Turning the tide for rare disease

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

By Rebecca Pender
12 December 2022

Press releases

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

By Rebecca Pender
8 December 2022

Press releases

NFL players spotlight Sickle Cell Disease Association of America

By Rebecca Pender
7 December 2022
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