Turning the tide for rare disease

Turning the tide for rare disease

Ms Colorado America 2022: two-time aneurysm survivor and a champion for cardiovascular disease prevention

By CONTRIBUTOR

31 August 2022

Turning the tide for rare disease

Jeans for Genes: raising awareness and funds to help people living with life-altering genetic conditions

By CONTRIBUTOR

29 August 2022

RARE News

Operationalise: Early Access Programmes Summit Europe 18-20th October 2022

By admin

24 August 2022

RARE News

RARE Rev-inar Episode 001 Early Access Programmes

By admin

24 August 2022

RARE News

Rare Disease Nurse Network (RDNN) announces registration as a charity with the UK Charity Commission (Registered Charity Number 1199654).

By admin

22 August 2022

Turning the tide for rare disease

Breast implant illness: a patient’s experiences and her mission to raise awareness and improve care

By CONTRIBUTOR

19 August 2022

RARE News

Parents of Children with Narcolepsy Invited to Participate in Registry

By admin

8 August 2022

Turning the tide for rare disease

My baby’s new prognosis: ‘She will not die’… but what will her life be like and how should I live mine?

By CONTRIBUTOR

8 August 2022

RARE News

Shining the light on eosinophilic diseases

By admin

5 August 2022

Turning the tide for rare disease

Living with HOD, a rare degenerative neurological condition, and fighting for answers for the community: “And you may ask yourself, ‘Well… how did I get here?’”

By CONTRIBUTOR

1 August 2022

Turning the tide for rare disease

Child Youth Care Zimbabwe: improving the lives of Zimbabwean RARE families—one step at a time

By CONTRIBUTOR

29 July 2022

Turning the tide for rare disease

The CDCN’s ROADMAP project – supporting the pivotal role of rare disease non-profit organisations in accelerating drug repurposing

By CONTRIBUTOR

20 July 2022

Charity & advocacy

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

By CONTRIBUTOR

12 July 2022

Turning the tide for rare disease

The Disability Policy Centre: putting accessibility and disability at the heart of legislation

By CONTRIBUTOR

8 July 2022

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

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