This day long event seeks to create a forum that brings together patient groups, healthcare, academics, researchers, biotech companies, and the pharmaceutical industry in a spirit of collaboration, innovation and passion to re-imagine and re-invent the Rare Disease patient journey.
Theme: “Re-imagining the Patient Journey”
There will be a morning of exploration of inspirational Rare Disease patient journeys where patients and patient carers have been partners in healthcare and treatment development. Take a walk through case-studies from early symptoms, dead-ends and steps forward to diagnosis, patient group formation, campaigning and research to pharma collaboration and drug development.
The afternoon will showcase pioneering work being undertaken in Cambridge and around the world to re-imagine and re-write the endings of Rare Disease Patient journeys from drug re -purposing and pharma ‘adoption’ of rare diseases to empowering patient revolution.
Come and join us at the RNHRD for a day focused on treatment and support for children and young adults with CRPS.
The day will feature talks from childhood and adolescent CRPS services, information about support available for children and young people with CRPS and their families, the experience one family have had living with CRPS and more.
Places are free of charge and will be booked on a first come first served basis.
Delegates under the age of 16 must be accompanied by an adult.
If you would like to attend then please email firstname.lastname@example.org for a booking form.
The UK’s first festive disability sports event will see our Everyday Superheroes cycle, walk, run, push, be pushed, or anything in between around Dorney’s spectacular lake. We have 1km, 5km and 10km challenges so there’s something for everyone.
The challenges will, of course, embody our ‘everything goes’ ethos. there’ll be no cut-off times and all types of gadgets & gismos will be welcome, from day chairs, handcycles, walking frames and trikes to tandems, race runners, blades and bikes.
It’s time for some festive fun, so we’ll be turning up the Christmas cheer to the max at this family-friendly event. What’s more, this will be taking place on International Disability Day so there will be plenty to celebrate!
If you would like to take part on behalf of CRPS UK then please contact us by email to email@example.com as we have spaces available!