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Science & tech
Science & tech
World Orphan Drug Alliance (WODA): bringing therapies to underserved patients around the globe
By CONTRIBUTOR
6 July 2022
Rare insights
Teddington Trust and XPSG – coming together with a new identity for a new impact driven mission
By admin
1 July 2022
Medical
Intrahepatic cholestasis of pregnancy: a rare liver disorder that causes risk to unborn babies—the unique insights of Dr Laura Bonebrake, physician and ICP mother
By CONTRIBUTOR
29 June 2022
Charity & advocacy
Married on a mountain with a collapsed lung
By CONTRIBUTOR
23 June 2022
Turning the tide for rare disease
The housing crisis: the unequal impact on the disabled community and the urgent need to listen to its voice
By CONTRIBUTOR
17 June 2022
Turning the tide for rare disease
Dr Justin West’s mission to accelerate the discovery of a disease-modifying treatment for KCNT1-related epilepsy
By CONTRIBUTOR
10 June 2022
Medical
Inozyme Pharma: developing therapies for abnormal mineralisation disorders
By CONTRIBUTOR
9 June 2022
RARE News
Gene People celebrates their first anniversary!
By admin
6 June 2022
Charity & advocacy
Maryland governor proclaims June 11 is KBG syndrome awareness day
By CONTRIBUTOR
6 June 2022
Patient voice
Making peace with numbers
By CONTRIBUTOR
6 June 2022
Charity & advocacy
Let’s Play Fair—Disability Charity Scope launches accessible play campaign which demands that every child has an equal right to play
By CONTRIBUTOR
3 June 2022
Turning the tide for rare disease
A mother’s mission to raise awareness of Bardet-Biedl syndrome and promote effective partnerships between carers and medical professionals
By CONTRIBUTOR
30 May 2022
RARE News
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 admin
26 May 2022
Turning the tide for rare disease
The Vascular Birthmarks Foundation: revolutionising awareness levels, access to treatments and physician education
By CONTRIBUTOR
26 May 2022
RARE News
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 admin
23 May 2022
RARE News
World Orphan Drug Alliance – combining forces to reach patients with rare diseases across the globe
By admin
23 May 2022
Charity & advocacy
Rare Diseases Organization Nepal holds inaugural meeting to formalise its mission, vision, values and main objectives
By CONTRIBUTOR
23 May 2022
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