Turning the tide for rare disease

Turning the tide for rare disease

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

By admin

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 admin

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 admin

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 admin

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 admin

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 admin

20 July 2022

Charity & advocacy

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

By admin

12 July 2022

Turning the tide for rare disease

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

By admin

8 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 admin

29 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 admin

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 admin

10 June 2022

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