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RARE and Under-Funded
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RARE News

RARE News

The World Orphan Drug Congress USA Boston July 11-13

By admin
23 May 2022

Turning the tide for rare disease

Saarah’s Foundation: a fitting legacy to Saarah Ahmed—daughter, sister, star student, aspiring neuroscientist, Miss Universe GB contestant and kEDS warrior

By CONTRIBUTOR
20 May 2022

Science & tech

Sure, you’ve heard about GNEM. But do you know about the Bulgarian variant?

By CONTRIBUTOR
19 May 2022

RARE News

GARDIAN Registry for types 2 & 3 Gaucher disease is now open for registrations

By admin
17 May 2022

Turning the tide for rare disease

The first step in advocacy is believing in the power of your own voice

By CONTRIBUTOR
16 May 2022

RARE News

Advocacy in Hemophilia Series: Event 1: Equity of Access in Hemophilia

By admin
12 May 2022

RARE News

Conference to pave the way for the next decade of rare diseases

By admin
11 May 2022

Turning the tide for rare disease

Beat SCAD’s passionate and persistent quest for answers for the spontaneous coronary artery dissection community

By CONTRIBUTOR
9 May 2022

Patient voice

A story of heartbreak and hope: Juju’s journey with CLN2 Batten disease

By CONTRIBUTOR
9 May 2022

Science & tech

Building a bridge between patient and pharma: the CMT story

By CONTRIBUTOR
9 May 2022

Turning the tide for rare disease

The Big Sunflower Project

By CONTRIBUTOR
2 May 2022

RARE News

National health charity CMTUK is to host annual conference on May 6th-7th

By admin
29 April 2022

Patient voice

The rare and wonderful opportunity of parenting a child with a RARE condition

By CONTRIBUTOR
29 April 2022

RARE News

Undiagnosed Day 2022 

By admin
28 April 2022

Turning the tide for rare disease

A multi-centre registry for idiopathic pulmonary capillaritis

By CONTRIBUTOR
25 April 2022

Turning the tide for rare disease

Project Sebastian: a safe space for the rare disease community to talk, listen and connect

By CONTRIBUTOR
20 April 2022

Turning the tide for rare disease

The Akari Foundation – a light of hope for people with DMD in the Hispanic community

By CONTRIBUTOR
11 April 2022
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