Press releases

Press releases

Gene People celebrates their first anniversary!

By Rebecca Pender

6 June 2022

Press releases

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 Rebecca Pender

26 May 2022

Press releases

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 Rebecca Pender

23 May 2022

Press releases

World Orphan Drug Alliance – combining forces to reach patients with rare diseases across the globe

By Rebecca Pender

23 May 2022

Press releases

GARDIAN Registry for types 2 & 3 Gaucher disease is now open for registrations

By Rebecca Pender

17 May 2022

Press releases

National health charity CMTUK is to host annual conference on May 6th-7th

By Rebecca Pender

29 April 2022

Press releases

Undiagnosed Day 2022

By Rebecca Pender

28 April 2022

Press releases

Inozyme Pharma Provides Update for Phase 1/2 Clinical Trials in ABCC6 Deficiency and ENPP1 Deficiency

By Rebecca Pender

27 April 2022

Press releases

California mental health initiative to fight hidden sickle cell symptoms

By Rebecca Pender

8 April 2022

Charity partner news

Medics4RareDiseases joins forces with Bionical Emas to launch new online training

By Rebecca Pender

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 Rebecca Pender

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 Rebecca Pender

28 March 2022

Press releases

Mississippi becomes first state in 2022 to sign newborn screening legislation

By Rebecca Pender

17 March 2022

Press releases

New research released with recommendations for improving psychological support at the point of a rare disease diagnosis

By Rebecca Pender

10 March 2022

Charity & advocacy

The Vascular Birthmarks Foundation, Dr. Giacomo Colletti, Laserplast, and Candela collaborate to provide pro bono laser treatments

By Rebecca Pender

10 March 2022

Charity partner news

Myhre Syndrome Foundation awards $150,000 in grants

By Rebecca Pender

3 March 2022

Press releases

Millions of people with rare diseases to benefit from faster diagnosis and better access to treatment

By Rebecca Pender

2 March 2022

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