We are a patient led group, who originally connected through the Facebook and Yahoo Group forums. We each know what it's like to have struggled to get a diagnosis, what it's like living with RP and how much it helps us to share our experiences.
If you haven’t already, please join our Facebook Groups which have over 2,000 members across the globe. They are very active group's and members share daily their experiences, knowledge and support to others dealing with Relapsing Polychondritis. We welcome patients already diagnosed, people struggling to get a diagnosis, family members, carers and health professionals wanting to learn more and raise awareness of this illness.
Our main aims are:
Helping others who may be without support or information about the condition
Giving reassurance to others through our own experience
Raising awareness of RP amongst the medical profession and the general public
Providing a forum for exchanging knowledge and seeking further information
Signposting to helpful resources
Providing a listening ear when needed.
This is work in progress and currently we have Country/Regional Co-Ordinator's for the UK (North, Midlands and London) They hope to meet up regularly for informal chats, lunches and get togethers. If you are interested in setting up a group in your country or more local to you, please contact us and we can put you in touch with others in your area.
We know what it's like to not be able to travel due to ill health, so we are setting up on-line meet ups this Spring - using Webinar technology, this will give us an opportunity to meet with others dealing with RP - either directly or as a family member or carer without the need to leave our own home. As were are Global, with different time zones involved, we hope to hold these at different times/days so that we can meet virtually as many of us as possible!
To hear about our next Virtual Meet-up and other developments, we invite you to join our mailing list
We're a friendly group of RP'ers who are on a mission to improve awareness and support.
if you would like to get involved in any way, please contact us.