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Industry Insights
Industry Insights
What can rare disease services learn from oncology services? A personal reflection
By CONTRIBUTOR
1 July 2024
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
Letters
“Glass siblings”: an unnecessary label
By CONTRIBUTOR
24 June 2024
RARE News
Little Moments Matter: a new film from Dravet Syndrome UK marks Dravet Syndrome Awareness Day
By admin
24 June 2024
Turning the tide for rare disease
The UK General Election 2024: Ensuring rare diseases remain a priority
By CONTRIBUTOR
24 June 2024
RARE parenting
A road less travelled is no less worthy: A RARE mum’s reflections on special needs parenting
By CONTRIBUTOR
21 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
Charity & advocacy
A day in the life: Being diagnosed with Fanconi anaemia as a child and as an adult—what are the differences?
By CONTRIBUTOR
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
Turning the tide for rare disease
Accelerating treatment access in the United States through financial assistance, education and advocacy
By CONTRIBUTOR
6 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
Charity & advocacy
Supercharging advocacy in Latin America for Hirschsprung’s disease and anorectal malformation
By CONTRIBUTOR
31 May 2024
Letters
When children take their first breath, their care is fully funded. Why isn’t it when they take their last?
By CONTRIBUTOR
31 May 2024
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