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Turning the tide for rare disease
Turning the tide for rare disease
The Vascular Birthmarks Foundation: revolutionising awareness levels, access to treatments and physician education
By CONTRIBUTOR
26 May 2022
RARE News
Lace up to raise awareness of PSP and CBD: PSPA relaunches fun campaign to raise awareness of rare brain conditions progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD)
By admin
23 May 2022
RARE News
World Orphan Drug Alliance – combining forces to reach patients with rare diseases across the globe
By admin
23 May 2022
Charity & advocacy
Rare Diseases Organization Nepal holds inaugural meeting to formalise its mission, vision, values and main objectives
By CONTRIBUTOR
23 May 2022
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
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