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RARE News
RARE News
International Neonatal Screening Day: A call for global implementation of neonatal screening programmes
By admin
28 June 2024
RARE News
PSPA event brings together families affected by progressive supranuclear palsy and corticobasal degeneration
By admin
25 June 2024
RARE News
Little Moments Matter: a new film from Dravet Syndrome UK marks Dravet Syndrome Awareness Day
By admin
24 June 2024
RARE News
Cure GABA-A: A year of transformative impact in the GABAAR community
By admin
20 June 2024
RARE News
American Kidney Fund convenes Rare Kidney Disease Action Network to advocate change for patients with rare causes of kidney disease
By admin
18 June 2024
RARE News
Myhre Syndrome Foundation hosts inaugural in-person conference, offering hope and support to the community
By admin
7 June 2024
RARE News
Country music legend Alan Jackson’s ‘Last Call’ tour to have a dual legacy
By admin
6 June 2024
RARE News
Global Liver Institute applauds US representative Nydia Velázquez’s reintroduction of the Liver Illness, Visibility, Education and Research Act (LIVER Act)
By admin
4 June 2024
RARE News
UK charity backs calls for improved support for carers
By admin
4 June 2024
RARE News
Families fight for rare epilepsy breakthrough and find it through a unique collaboration
By admin
28 May 2024
RARE News
Pop-up hospital gives chronically ill kids a summer camp
By admin
24 May 2024
RARE News
SMA Europe launches “real-life stories” to show how access to treatment and care impacts people living with spinal muscular atrophy
By admin
22 May 2024
RARE News
The Oxford-Harrington Rare Disease Centre announces newly funded grant award programmes to develop new therapies for Friedreich’s ataxia
By admin
22 May 2024
RARE News
DEBRA UK supports the Burma Skincare Initiative at the Chelsea Flower Show
By admin
21 May 2024
RARE News
Global nonprofit CureDuchenne to host FUTURES National Conference for the Duchenne and Becker muscular dystrophy community (May 23-26, Orlando, Florida)
By admin
14 May 2024
RARE News
Happy Heart Week: raising awareness of Barth syndrome—over a decade of hope and support
By admin
9 May 2024
RARE News
The Jackson Laboratory receives $8 million in federal funding to expand research capacity in rare diseases
By admin
6 May 2024
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