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RARE News

RARE News

CureDuchenne hosts conversation with Pfizer to discuss opening of first U.S. sites in phase 3 trial of investigational gene therapy for ambulatory patients with Duchenne muscular dystrophy

By admin
26 May 2022

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
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