START

HERE

Whether you are newly diagnosed, still searching for answers or supporting someone you love, you are in the right place.

I'VE JUST BEEN DIAGNOSED.

Receiving a diagnosis of Relapsing Polychondritis can feel overwhelming. You may have questions, worries, or simply not know where to begin. That is completely normal.

RP is a rare, chronic inflammatory disease affecting cartilage throughout the body including the ears, nose, airways, joints and eyes. No two people experience it in exactly the same way, and your care should always be guided by your own healthcare team.

Where to start:

Visit our resources page for information on symptoms, diagnosis and treatment
Join our Facebook support group to connect with others who understand
Sign up to our mailing list to stay up to date

I THINK I MIGHT HAVE RP.

f you have been experiencing unexplained symptoms, here are some key signs to be aware of:

Red, swollen or painful ears - often sparing the earlobe
Nose pain or saddle nose deformity
Breathlessness, hoarse voice or stridor
Eye inflammation, redness or pain
Joint pain, swelling or stiffness
Hearing loss, tinnitus or dizziness

If any of this sounds familiar, please speak to your GP and ask about Relapsing Polychondritis. You can also download our free clinician leaflet to share with your doctor.

This is not a diagnostic tool. Always seek advice from your own healthcare team.

I'M SUPPORTING SOMEONE.

Supporting someone with a rare disease can be both rewarding and challenging. Here are some helpful ways to support someone with RP:

Listen and acknowledge their experiences, even when symptoms are not visible
Help with appointments and keeping track of information if needed
Learn about RP to better understand the challenges involved
Look after your own wellbeing too

You do not need to have all the answers. Simply being present and showing understanding makes a significant difference. Our community is open to carers and family members as well as patients. You are welcome here.

FIND YOUR COMMUNITY.

Connecting with others who truly understand RP can make a real difference.

Facebook Support Group - share experiences and connect with our community
Health Unlocked - find our community on the world's largest social network for health
Mailing List - receive the latest RP news, research and updates
Resources Page - research papers, webinars and information for patients and clinicians