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.

Today is #RareDiseaseDay – Read my Patient Experience: Living with multiple rare diseases | Pharmafile | What’s your #Rare? care to share?

Not everyone with EDS has hypermobility, and not everyone with hypermobility has EDS!… Read More Today is #RareDiseaseDay – Read my Patient Experience: Living with multiple rare diseases | Pharmafile | What’s your #Rare? care to share?

Reflecting back! My year of patient, health, research and pharma advocacy 2019 | Carole Scrafton

In all honesty I am amazed that I have done all this especially considering my health was quite bad last year. I do tend to distract myself as much as possible, but crikey, I got around quite a bit didn’t I. – closing thoughts… Read More Reflecting back! My year of patient, health, research and pharma advocacy 2019 | Carole Scrafton

#RAREsummit19 | 23 September in Cambridge | I’m going, will you join us?!

Will you be joining us in supporting #RAREsummit19 on 23 September in Cambridge.  A highlight on the rare disease calendar. Being an official media partner for this event is a great honour in the name of rare disease advocacy and I cannot wait to attend the event and be a part of the day’s activities.… Read More #RAREsummit19 | 23 September in Cambridge | I’m going, will you join us?!