Community support for rare kidney conditions

If you are living with a rare condition, building a community around yourself can help you feel less isolated, access the latest information and share your lived experience to give hope to others.

When you’re living with a rare kidney condition, or your child is, community’s vital – and the most effective support often comes from other people living with the same condition.

"Patient advocacy and support groups can be key," says health psychologist Dr Laura Meade. "They can give emotional support and share their own experiences of what they’ve found helpful."

These are just a few specific reasons you should build a community around yourself.

So how do you create a community?

Join a patient support group

You can find them for lots of different conditions. Your healthcare team may be able to point you towards one, or you can find links to groups on the Kidney Care UK rare renal hub page or the Rare Disease website.

Unique is a charity which supports all those with rare chromosome and gene disorders and their families.

If your condition isn’t listed, it’s worth doing an internet search, simply by putting in the name of your condition, and ‘UK support group’.

Sometimes, conditions are so rare they’re known by different names, or the name may have changed – so if you can’t find anything, it’s worth asking your healthcare team if there’s another name you should search by.

You could also try Kidney Care UK's online community.

Can’t find a UK group? If your condition is very rare, there may not be a group in this country, but you might be able to find an international one. Or you could look for support groups for people with related conditions or other rare diseases. Research has found it’s often being able to share the experiences of living with a rare condition that’s key.

Rebecca, 44, developed kidney failure in her 20s as a result of a rare genetic condition, although it wasn’t diagnosed until she was in her late 30s. "When I was first diagnosed, I couldn’t find anything online about my condition, and there were no support groups for it. But I got a lot of support through other younger people with kidney conditions. We all knew how it was to end up on dialysis in our 20s, and most had rare conditions so we could talk to each other about the frustrations of trying to get a diagnosis."

Keep talking to your healthcare team

They may not have a lot of information on your condition, but if you ask questions or share things you’ve learned, it may inspire them to be proactive, look for ongoing trials and discuss the condition with colleagues. And communicate with all your healthcare professionals – you never know who’s going to take an interest.

Rebecca says her GP became an advocate for her. "She didn’t have any knowledge herself but she learned as much as she could about my condition, knew how to find out who to speak to, stood up for me when specialists were dismissive, and helped me understand clinical terms. Emotionally, it made a big difference to know she was on my side."

Know your information sources

It’s tempting to search online for as much information as you can find on a rare condition. But often, there’s very little available. Any information you do find may not be credible or balanced, you may only come across scientific papers that can be hard to understand, and you may read things that worry you unnecessarily.

Stick to reputable sources, like our website, and those run by other charities and specialist support groups. Look for the PIF TICK, the UK’s quality mark for print and online health and care information. Organisations like Kidney Care UK have to be independently assessed to receive the PIF TICK, so you can be confident that the information they provide is evidence-based, understandable, jargon-free and up-to-date.

If you’re in doubt, your healthcare team may be able to direct you to reliable, accessible information.

Get charity support

Kidney Care UK and other kidney charities can be an important source of information and help. Don’t be put off if you can’t find anything about your specific condition on charity websites – they may still be able to help if you contact them.

Contact our Patient Support & Advocacy Service for help with everything from emotional difficulties to getting benefits.