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RARE and Under-Funded
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Medical

Medical

Sanius Health’s mission to personalise care for people with sickle cell disease—using advanced wearable technology

By CONTRIBUTOR
29 September 2022

Charity & advocacy

Governing with Purpose: How to lead a brilliant board – a guide for charity trustees

By CONTRIBUTOR
29 September 2022

RARE News

American Kidney Fund’s Unknown Causes of Kidney Disease Coalition set to advance policies on rare kidney diseases

By admin
26 September 2022

Science & tech

Merging the metaverse and the rare disease community: join the conversation

By CONTRIBUTOR
22 September 2022

RARE News

The Dash Alliance and RARE Revolution Magazine – levelling up for RARE

By admin
21 September 2022

Medical

The RAPSODI study: an online study to understand the association between the Gaucher-causing gene and Parkinson’s

By CONTRIBUTOR
14 September 2022

Turning the tide for rare disease

Being a strong father does not mean staying silent in times of trauma

By CONTRIBUTOR
14 September 2022

Turning the tide for rare disease

A ‘bullhorn in stilettoes’: Tisha Foster’s unique approach to raising awareness of hidden disabilities

By CONTRIBUTOR
12 September 2022

Patient voice

Passing on a rare disease: a RARE mother’s journey from ‘blameless guilt’ to joy

By CONTRIBUTOR
5 September 2022

RARE News

The 2022 Jeans For Genes grant programme is now open and inviting applications

By admin
1 September 2022

RARE News

Sickle Cell Disease Association celebrates National Sickle Cell Awareness Month

By admin
31 August 2022

Turning the tide for rare disease

Ms Colorado America 2022: two-time aneurysm survivor and a champion for cardiovascular disease prevention

By CONTRIBUTOR
31 August 2022

Turning the tide for rare disease

Jeans for Genes: raising awareness and funds to help people living with life-altering genetic conditions

By CONTRIBUTOR
29 August 2022

RARE News

Operationalise: Early Access Programmes Summit Europe 18-20th October 2022

By admin
24 August 2022

RARE News

RARE Rev-inar Episode 001 Early Access Programmes

By admin
24 August 2022

RARE News

Rare Disease Nurse Network (RDNN) announces registration as a charity with the UK Charity Commission (Registered Charity Number 1199654).

By admin
22 August 2022

Turning the tide for rare disease

Breast implant illness: a patient’s experiences and her mission to raise awareness and improve care

By CONTRIBUTOR
19 August 2022
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