Turning the tide for rare disease

Alpha-1: best practices for testing for this and other late-onset genetic diseases

By Rebecca Pender

30 August 2023

Press releases

Million Dollar Bike Ride pilot grant program request for applications

By Rebecca Pender

24 August 2023

Press releases

Charity survey shows 60% of people with PSP and CBD are misdiagnosed

By Rebecca Pender

17 June 2023

RARE REV-inar

Gene therapies: a new age of care in rare diseases?

By Rebecca Pender

14 June 2023

Press releases

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

By Rebecca Pender

30 April 2023

Medical

The GLISTEN trial

By Rebecca Pender

14 April 2023

Science & tech

Optimising market access for rare disease products: insights from Craig Caceci

By Rebecca Pender

27 February 2023

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