The Aplastic Anaemia Trust Patient Support Facebook Group

If you or someone you know is diagnosed with aplastic anaemia, something you have never heard of, that can be bewildering. Repeatedly having to explain the condition can be isolating, and you may feel like no-one else really understands.

Our moderated Facebook community is here to help. Post your question in the group and receive support from a family of over 2000 people with personal experience of aplastic anaemia, carefully moderated by a tight team of people from The Aplastic Anaemia Trust. 

Join the group

Who moderates the group?

Once you've joined the group, we will be there to welcome you! Our team of part-time staff and volunteers, will manage and respond to you in the group. You will see these people in the group labelled as "group expert".

Sean Bottomley, Online Community Volunteer Sean has been supporting The AAT by running our Facebook group for many years. He's always there to lend a friendly ear, and to share his own experiences of treatment.  Whatever your concern or question, Sean will probably have heard it before - so don't feel shy - make your first post and say hello!

Zoe Smith, Outreach Coordinator - North England Zoe is currently in treatment for aplastic anaemia and joined our team to help us to build relationships and support our community. You can email Zoe directly at [email protected].

Sam Williams, Support and Outreach Community Manager Having been through aplastic anaemia treatment himself as a child and receiving a stem cell transplant at the age of 21, Sam is passionate about supporting patients. He's here to provide you with a friendly ear, and expert, up to date information about the disease and treatment.  Sam has extensive experience of managing online communities and manages our thriving Facebook community, supported by our wonderful volunteers. He has also been an ambassador for Anthony Nolan for many years, encouraging people to join the stem cell register. If you'd like a chat with Sam, you can also call our helpline number on +44 (0) 300 102 3202 or email [email protected].

Kim Ball, Outreach Coordinator - Wales Kim joined the AA community when she was diagnosed in 2017 and received ATG treatment in Cardiff in 2018. She started in her new role in 2021 when we expanded our outreach work to better support patients regionally. Kim is  passionate about creating a support network for patients and families to help them feel less isolated and overwhelmed. She has previously worked in care settings and as a support worker for people living with mental health difficulties or  learning disabilities. Kim moved from Sussex to Caerphilly in 2013 with her two sons and enjoys finding new places to walk, meeting new people and slowly getting back into fitness after her treatment. You can email Kim directly at [email protected].

Group rules

Sub groups

Some members of our community find it difficult to start conversations in our core group, so we have provided separate spaces for them:

Aplastic anaemia bereavement group

If you have lost someone to aplastic anaemia, you can find people in this group who have been through the same thing. Here, you can post openly about your experience without worrying about frightening members who have been recently diagnosed. 

Join the bereavement group

Aplastic anaemia Watch and Wait group

Being put on watch and wait for a serious, rare condition can leave you feeling confused and concerned about the future. You might be dealing with very different practical and emotional challenges to people who are in active treatment, which means you may feel awkward posting about your experiences in the main group. That's why we've created this new sub-group, where you can talk to other people who are also living with "watch and wait". 

Join the Watch and wait group