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Press releases
Press releases
GARDIAN Registry for types 2 & 3 Gaucher disease is now open for registrations
By rpender
17 May 2022
Press releases
National health charity CMTUK is to host annual conference on May 6th-7th
By rpender
29 April 2022
Press releases
Undiagnosed Day 2022
By rpender
28 April 2022
Press releases
Inozyme Pharma Provides Update for Phase 1/2 Clinical Trials in ABCC6 Deficiency and ENPP1 Deficiency
By rpender
27 April 2022
Press releases
California mental health initiative to fight hidden sickle cell symptoms
By rpender
8 April 2022
Charity partner news
Medics4RareDiseases joins forces with Bionical Emas to launch new online training
By rpender
5 April 2022
Events
Global non-profit CureDuchenne announces futures national conference for the Duchenne muscular dystrophy community to be held May 27–29
By rpender
1 April 2022
Press releases
Mental health and care navigation top list of needs for people living with neurodegenerative diseases at Adira Foundation congress
By rpender
28 March 2022
Press releases
Mississippi becomes first state in 2022 to sign newborn screening legislation
By rpender
17 March 2022
Press releases
New research released with recommendations for improving psychological support at the point of a rare disease diagnosis
By rpender
10 March 2022
Charity & advocacy
The Vascular Birthmarks Foundation, Dr. Giacomo Colletti, Laserplast, and Candela collaborate to provide pro bono laser treatments
By rpender
10 March 2022
Charity partner news
Myhre Syndrome Foundation awards $150,000 in grants
By rpender
3 March 2022
Press releases
Millions of people with rare diseases to benefit from faster diagnosis and better access to treatment
By rpender
2 March 2022
Press releases
THE TAPS SUPPORT FOUNDATION
By rpender
28 February 2022
Press releases
Teddington Trust and the XP Support Group to join forces to strengthen support for the xeroderma pigmentosum community
By rpender
15 February 2022
Press releases
The Neuromuscular Disease Foundation Takes the Lead
By rpender
4 February 2022
Press releases
NORD’s RareLaunch Program Announces Expanded Course Learning to Help Launch and Grow Rare Disease Nonprofits
By rpender
20 January 2022
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