Charity & advocacy

Teach RARE: a family’s rare disease journey continues by supporting caregivers with special education teaching and learning

By CONTRIBUTOR

15 March 2023

Charity & advocacy

“Are we there yet?” Designing communication initiatives based on community needs – the Comms Working Group at SMA Europe

By CONTRIBUTOR

15 March 2023

Charity & advocacy

“Rare disease knows no borders”: EURORDIS-Rare Diseases Europe and US-based EveryLife Foundation for Rare Diseases team up against the global public health crisis of rare disease

By CONTRIBUTOR

8 March 2023

Industry Insights

The new world of gene therapy: five questions answered

By CONTRIBUTOR

8 March 2023

Industry Insights

Red tape is ruining the potential of partnerships between patient groups and the pharmaceutical industry – it’s time for change

By CONTRIBUTOR

1 March 2023

Science & tech

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

By CONTRIBUTOR

27 February 2023

Industry Insights

Finding investment for gene therapies

By CONTRIBUTOR

22 February 2023

Turning the tide for rare disease

Aaron Jackson: raising awareness of organ donation, and bringing hope to the transplant community

By CONTRIBUTOR

15 February 2023

RARE Ramblings

Richard’s RARE Ramblings: FEAR!

By CONTRIBUTOR

8 February 2023

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

Turning the tide for rare disease

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

By CONTRIBUTOR

25 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

Patient voice

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

By CONTRIBUTOR

11 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

Turning the tide for rare disease

The Christmas ring

By CONTRIBUTOR

19 December 2022

Turning the tide for rare disease

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

By CONTRIBUTOR

15 December 2022