Patient voice

Cavernous malformation and the Breaking Barriers Initiative

By CONTRIBUTOR

5 November 2021

Patient voice

Please don’t call my son a patient

By CONTRIBUTOR

3 November 2021

Charity & advocacy

October is CMT awareness month in the UK

By CONTRIBUTOR

22 October 2021

Charity & advocacy

Applications open for Duchenne Patient Academy 2021

By CONTRIBUTOR

18 October 2021

Sunday sessions

Buddhism, yoga and meditation: how Dee Cowburn is following the path to mindfulness to guide her through life’s darker times

By CONTRIBUTOR

8 October 2021

Sunday sessions

Relationships can be tricky in a world of rare disease

By CONTRIBUTOR

8 October 2021

Sunday sessions

Sholto’s war

By CONTRIBUTOR

8 October 2021

RARE caregiving

Parenting superpower series – stay listening

By CONTRIBUTOR

7 October 2021

RARE caregiving

Every day is a gift: interview with Dr Al Freedman RARE dad and counselling psychologist

By CONTRIBUTOR

7 October 2021

RARE caregiving

Bernd’s brave new world

By CONTRIBUTOR

7 October 2021

RARE caregiving

Fatherhood and fighting for change in the world of rare disease

By CONTRIBUTOR

7 October 2021

RARE caregiving

TWIN RUN: Dutch dad raising awareness of twin complications

By CONTRIBUTOR

7 October 2021

RARE caregiving

A mum on a mission to make the world a more inclusive place for RARE children

By CONTRIBUTOR

7 October 2021

Patient voice

Reframing the conversation around grief

By CONTRIBUTOR

6 October 2021

A day in the life

Realising our workplace vision

By CONTRIBUTOR

6 October 2021

Patient voice

RARE Revolution’s bereavement survey

By CONTRIBUTOR

6 October 2021

A day in the life

RARE Employment Q&A with Police Inspector David Singleton

By CONTRIBUTOR

6 October 2021