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RDD Spotlight edition - Hereditary angioedema
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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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