Rare insights

Rare insights

Caring for his children with VICI syndrome: Muzaffar Anjum’s story

By CONTRIBUTOR

8 December 2021

Rare insights

“Do you hear me?”

By CONTRIBUTOR

3 December 2021

Rare insights

Seeing Red

By CONTRIBUTOR

26 November 2021

Rare insights

My scars tell a story

By CONTRIBUTOR

24 November 2021

Rare insights

A new UK charity launches to support those impacted by Glut1DS

By CONTRIBUTOR

12 November 2021

Rare insights

Hannah, Me and NCSE

By CONTRIBUTOR

10 November 2021

Rare insights

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

By admin

9 November 2021

Rare insights

Cavernous malformation and the Breaking Barriers Initiative

By CONTRIBUTOR

5 November 2021

Rare insights

Please don’t call my son a patient

By CONTRIBUTOR

3 November 2021

Rare insights

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

By admin

30 October 2021

Rare insights

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 insights

Research Tools Matching Grant Program now accepting applications!

By admin

25 October 2021

Rare insights

October is CMT awareness month in the UK

By CONTRIBUTOR

22 October 2021

Rare insights

Applications open for Duchenne Patient Academy 2021

By CONTRIBUTOR

18 October 2021

Rare insights

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

By admin

13 October 2021

Rare insights

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

Rare insights

Relationships can be tricky in a world of rare disease

By CONTRIBUTOR

8 October 2021

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