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Long Term Caregiving
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Press releases

Press releases

Parents of Children with Narcolepsy Invited to Participate in Registry

By rpender
8 August 2022

Press releases

Shining the light on eosinophilic diseases

By rpender
5 August 2022

Charity & advocacy

ANGEL AID Unveils Raregivers™ Global Mental Health Initiative for Caregivers, Patients and Professionals

By rpender
12 July 2022

Press releases

BioCryst new long-term study data and an independent 6 month follow up of patients enrolled in the UK Early Access to Medicines Scheme (EAMS) demonstrates the long-term impact of prophylactic Orladeyo® (berotralstat) on HAE

By rpender
5 July 2022

Charity partner news

Teddington Trust and XPSG – coming together with a new identity for a new impact driven mission

By rpender
1 July 2022

Press releases

Gene People celebrates their first anniversary!

By rpender
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 rpender
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 rpender
23 May 2022

Press releases

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

By rpender
23 May 2022

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
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