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RARE and Under-Funded
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Author: CONTRIBUTOR

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

Turning the tide for rare disease

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

By CONTRIBUTOR
12 December 2022

Charity & advocacy

#DuchenneCan: celebrating what people with Duchenne CAN achieve

By CONTRIBUTOR
5 December 2022

Turning the tide for rare disease

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

By CONTRIBUTOR
1 December 2022

Turning the tide for rare disease

Jessica Massengale: living strong with scleroderma

By CONTRIBUTOR
24 November 2022
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