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Patient voice

“Do you hear me?”

By rpender
3 December 2021

Medical

Seeing Red

By rpender
26 November 2021

Patient voice

My scars tell a story

By rpender
24 November 2021

Charity & advocacy

A new UK charity launches to support those impacted by Glut1DS

By rpender
12 November 2021

Patient voice

Hannah, Me and NCSE

By rpender
10 November 2021

Charity partner news

Cambridge charity launches crowdfunding campaign to raise £30,000 for the first global AKU registry.

By rpender
9 November 2021

Patient voice

Cavernous malformation and the Breaking Barriers Initiative

By rpender
5 November 2021

Patient voice

Please don’t call my son a patient

By rpender
3 November 2021

Events

Breaking Down Barriers – Understanding Health Inequalities Event

By rpender
1 November 2021

Charity partner news

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

By rpender
30 October 2021

Press releases

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

By rpender
26 October 2021

Press releases

Research Tools Matching Grant Program now accepting applications!

By rpender
25 October 2021

Charity & advocacy

October is CMT awareness month in the UK

By rpender
22 October 2021

Press releases

Coming Soon: Digital Spotlight with Prevail Therapeutics on Frontotemporal Dementia

By rpender
22 October 2021

Charity & advocacy

Applications open for Duchenne Patient Academy 2021

By rpender
18 October 2021

Weblinks and references

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

By rpender
13 October 2021

Charity partner news

Niemann-Pick UK are set to launch ‘Invisible Me’ campaign and short film ‘Invisible Manners’

By rpender
14 September 2021
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