Turning the tide for rare disease

Turning the tide for rare disease

A new year brings new opportunities: Global Genes – supporting patients, caregivers, advocates and organisations

By CONTRIBUTOR

1 February 2023

Industry Insights

“Developing positive change in how we diagnose, treat and care for patients with a rare disease.” Rhetoric or reality?

By CONTRIBUTOR

1 February 2023

RARE News

From SMA Europe: We are excited to announce that our OdySMA project is going live!

By admin

1 February 2023

Turning the tide for rare disease

Medics 4 Rare Diseases: reframing rare disease – one Instagram story at a time

By CONTRIBUTOR

25 January 2023

RARE News

Raising awareness and celebrating people with craniofacial differences

By admin

24 January 2023

RARE News

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

By admin

23 January 2023

RARE News

Neuromuscular Disease Foundation’s Dr. Kelly Crowe presented with $20,000 research grant from Uplifting Athletes

By admin

20 January 2023

RARE News

Know your sickle cell trait status, according to new campaign

By admin

20 January 2023

RARE News

Collaboration between Pro Rare Austria and Salzburg University of Education becomes a cornerstone of the global 2023 Rare Disease Day campaign

By admin

19 January 2023

RARE News

Rare Disease Innovation & Partnership Summit

By admin

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 CONTRIBUTOR

18 January 2023

RARE News

Cell & Gene Therapy Summit 2023

By admin

18 January 2023

RARE News

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

By admin

18 January 2023

Patient voice

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

By CONTRIBUTOR

11 January 2023

RARE News

“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

Turning the tide for rare disease

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

By CONTRIBUTOR

4 January 2023

RARE News

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

By admin

3 January 2023

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