There have been many occasions where I’ve felt isolated and alone when thinking about my rare condition. However, being part of the support group for people with my condition has helped immensely. There’s nothing like the feeling of relief when walking into a room and seeing people who like you!

Connecting with others

Connecting with others who are going through similar experiences can help you feel understood and validated. It can reduce feelings of isolation, help you find information, learn new ideas and find mutual support.

Support groups might be online, in person, or a combination of both.

You might prefer to just ‘dip in and out’ or depending on your needs, preferences and circumstances, you might want to get more involved. How involved you chose to be may change over time. 

If hearing about other people’s experiences feels ‘too much’ at any point, remember it’s also fine to take a step back. You can always re-engage if and when you want to.

How to find support organisations

There are lots of charities that share information and support for people affected by a rare condition. You can look for the organisation relevant to you through the larger charities listed below.

If you are impacted by an ultra-rare condition or are undiagnosed, you may be able to find others in a similar situation, or with an associated type of condition. The charities listed below should also be able to help with this.

You can also access support through organisations that are focused on certain aspects of living with a rare condition that are shared by other people. This could include being a carer, neurodiversity, parenting a child with SEN, or living with cancer.

You can make contact with as many – and whichever – organisations you like. It doesn’t have to be just one.