Patient voice

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

RARE News

What is HH? Carrie Fulcher tells her story of finally discovering that she had a hypothalamic hamartoma

By admin

30 October 2021

RARE News

Rare Community Network and Medics4RareDisease platform the underrepresented voices of the rare disease community for NHS England & Improvement meeting

By admin

26 October 2021

RARE News

Research Tools Matching Grant Program now accepting applications!

By admin

25 October 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

Weblinks and references

Digital health revolution and its transformative potential for rare diseases – WEBLINKS AND REFERENCES

By admin

13 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

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