Rare insights

Rare insights

The RAPSODI study: an online study to understand the association between the Gaucher-causing gene and Parkinson’s

By CONTRIBUTOR

14 September 2022

Rare insights

Being a strong father does not mean staying silent in times of trauma

By CONTRIBUTOR

14 September 2022

Rare insights

A ‘bullhorn in stilettos’: Tisha Foster’s unique approach to raising awareness of hidden disabilities

By CONTRIBUTOR

12 September 2022

Rare insights

Passing on a rare disease: a RARE mother’s journey from ‘blameless guilt’ to joy

By CONTRIBUTOR

5 September 2022

Rare insights

The 2022 Jeans For Genes grant programme is now open and inviting applications

By admin

1 September 2022

Rare insights

Sickle Cell Disease Association celebrates National Sickle Cell Awareness Month

By admin

31 August 2022

Rare insights

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

By CONTRIBUTOR

31 August 2022

Rare insights

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

By CONTRIBUTOR

29 August 2022

Rare insights

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

By admin

24 August 2022

Rare insights

RARE Rev-inar Episode 001 Early Access Programmes

By admin

24 August 2022

Rare insights

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

By admin

22 August 2022

Rare insights

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

By CONTRIBUTOR

19 August 2022

Rare insights

Parents of Children with Narcolepsy Invited to Participate in Registry

By admin

8 August 2022

Rare insights

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 insights

Shining the light on eosinophilic diseases

By admin

5 August 2022

Rare insights

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

Rare insights

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

By CONTRIBUTOR

29 July 2022

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