Are you affected by a rare genetic condition?
Have you started or are you looking to start a new patient support group?
Do you want help to develop the support group: reaching out to other patients, holding meet ups for patients, getting in contact with researchers and clinicians, developing information for patients, increasing your online profile, getting charity status?
Patient support groups are an excellent tool to support patients and their families, to provide information to newly diagnosed patients and to raise awareness among health and social care professionals. Patient support groups are also critical to driving research forward and to ensure that patient voice is at the heart of research and commissioning.
The Building Rare Communities project empowers patient support groups to be a reliable and sustainable source of information and support. We will also empower you to develop the organisation to meet your patients’ needs.
Genetic Alliance UK is running a one day workshop on Saturday, 4 February. The event will take place in Birmingham. We will cover reasonable travel expenses.
We have funding to help support groups who are keen to get up and running. If you are interested and need further support after the workshop you will be invited to join our Building Rare Communities project.
If you are looking to set up a new patient group or have set one up in the past year then you are eligible to take part. If you are interested in attending the workshop but are unsure whether you are eligible please contact Mariana Campos via email (firstname.lastname@example.org) or on 02078310883
If you are interested in taking part then register your interest here https://www.surveymonkey.co.uk/r/R8VBD22.