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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