We’re off mobilising for charity – 1 month long Superhero Series challenge

Using my rollator with its seat for those appropriately paced stops we hope to get out of the back lane this time. Last year the pandemic put restrictions on how I could complete the challenge.… Read More We’re off mobilising for charity – 1 month long Superhero Series challenge

PROUD PARTNERS – Precision Medicine Forum PATIENT WEEK

Patient Week convenes healthcare professionals, researchers, industry, payers and patients/patient advocates in a unique setting which puts the patient front and centre of the discussions. This time around there will be panels sessions, roundtables, 1-2-1 networking and group networking sessions.… Read More PROUD PARTNERS – Precision Medicine Forum PATIENT WEEK

Dazzle4Rare 2021 – #StrutYourStripes with us at ZebraStrutters to raise awareness!

A simple goal of signal boosting rare and undiagnosed patient and community messages. August week long event, joining allies, advocates, small and large non-profit organisations, and others who wish to elevate rare and undiagnosed voices.… Read More Dazzle4Rare 2021 – #StrutYourStripes with us at ZebraStrutters to raise awareness!

ARDEnt Report – Rare Disease and the impact of the COVID19 pandemic.

“CRDN collaborated with Medics 4 Rare Diseases and Rare Revolution Magazine to bring together a cross sector group of experts and advocates newly named ARDEnt (Action for Rare Disease Empowerment) to produce a report called “Future Proofing Rare Disease Care, Research, and Treatment.” … Read More ARDEnt Report – Rare Disease and the impact of the COVID19 pandemic.