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RARE and Under-Funded
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Author: CONTRIBUTOR

RARE Ramblings

Richard’s RARE Ramblings: accommodating for rare conditions

By CONTRIBUTOR
9 August 2023

Charity & advocacy

Creld1 Warriors—bringing the scientific and parent community together

By CONTRIBUTOR
2 August 2023

A day in the life

A day in the life: graduation day for Raymond Huml’s son, Jon

By CONTRIBUTOR
25 July 2023

Charity & advocacy

Connie Montgomery’s late diagnosis with two rare diseases: factor VII deficiency and pemphigus vulgaris

By CONTRIBUTOR
19 July 2023

Industry Insights

The ABPI Code Partnership events: a step towards better partnerships?

By CONTRIBUTOR
12 July 2023

Science & tech

LifeArc announces investment of more than £100 million into rare disease research by 2030

By CONTRIBUTOR
6 July 2023

RARE caregiving

The barista and the quiltmaker: life lessons from strangers

By CONTRIBUTOR
5 July 2023

A day in the life

A day in the life: Josiah’s diagnosis with familial cold autoinflammatory syndrome

By CONTRIBUTOR
28 June 2023

Reviews

RARE Reads: Thrive Rare: Embracing The Uniqueness Within

By CONTRIBUTOR
27 June 2023

Charity & advocacy

Dee and Nadia’s journey with Kawasaki disease

By CONTRIBUTOR
21 June 2023

Charity & advocacy

Global Genes and Cure JM Foundation: expanding mental health support for the rare disease community

By CONTRIBUTOR
7 June 2023

Patient voice

Together—every step

By CONTRIBUTOR
31 May 2023

A day in the life

A day in the life: Cathy Moughton, PSPA helpline care navigator

By CONTRIBUTOR
24 May 2023

Charity & advocacy

GACI Global: circulating hope for families affected by a rare genetic disease that primarily affects the circulatory system 

By CONTRIBUTOR
17 May 2023

Patient voice

Generalised arterial calcification of infancy (GACI): Ruben’s story

By CONTRIBUTOR
17 May 2023

Turning the tide for rare disease

Changing the landscape for the differently-abled community one smile at a time. Dr Sai Kaustuv is our RARE Inspiration

By CONTRIBUTOR
10 May 2023

Industry Insights

COVID: Three years on—what has changed?

By CONTRIBUTOR
3 May 2023
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