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RARE News
RARE News
Gene People celebrates their first anniversary!
By admin
6 June 2022
Charity & advocacy
Maryland governor proclaims June 11 is KBG syndrome awareness day
By CONTRIBUTOR
6 June 2022
Patient voice
Making peace with numbers
By CONTRIBUTOR
6 June 2022
Charity & advocacy
Let’s Play Fair—Disability Charity Scope launches accessible play campaign which demands that every child has an equal right to play
By CONTRIBUTOR
3 June 2022
Turning the tide for rare disease
A mother’s mission to raise awareness of Bardet-Biedl syndrome and promote effective partnerships between carers and medical professionals
By CONTRIBUTOR
30 May 2022
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
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