This Infosheet takes you through what to do if you are thinking about setting up an AL amyloidosis Support Group and what help is available to you.
Myeloma UK facilitates over 90 Support Groups around the UK; of which around half a dozen are amyloidosis specific.
The Groups exist to provide mutual support, friendship, information, advice and a listening ear to all those affected by myeloma, haematological cancers and AL amyloidosis.
Support Groups bring together patients and their families who share a common need for information, support, reassurance and to meet others.
Although setting up a Support Group can be extremely rewarding, it is not without its challenges and may seem a bit
daunting, especially if you’ve never done anything like it before.
Things to consider:
- Is there a need for a Support Group?
- Deciding on a Support Group Leader.
- Where to meet, and meeting frequency.
- What to discuss (at the first meeting) and defining the aims of the Support Group will help structure meetings moving forwards.