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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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