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

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

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

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

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

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