ABOUT
US
Our aim is to share information about this rare disease and offer support to those living with RP or struggling to get a diagnosis.
WHO WE ARE.
We are a patient-led group who originally connected through Facebook and Yahoo Groups. Each of us understand 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.
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If you haven’t already, please join our Facebook Group which has over 4,000 members across the globe. Our group is very active and members share 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 AIMS.
Our aim is to share information about this rare disease and offer support to those living with RP or struggling to get a diagnosis. We do this by:
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Helping others who may be without support or information about the condition
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Giving reassurance to others through our own experience
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Raising awareness of RP amongst the medical profession and the general public
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Providing a forum for exchanging knowledge and seeking further information
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Signposting to helpful resources
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Providing a listening ear when needed
REGIONAL MEET-UPS.
We currently have Country/Regional Co-Ordinators for the UK (London, Midlands and North). 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.
VIRTUAL MEET-UPS.
We know what it's like to not be able to travel due to ill health, so we're setting up online meet-ups this Spring using webinar technology. This will give us all 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 we are a global group with different time zones involved, we hope to hold these at various times so that we can meet as many of us as possible!
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To hear about our next virtual meet-up and other developments, we invite you to join our mailing list.
