News & Events

Building Rare Communities Workshop

Last Reviewed 28/11/2016

By Mariana Campos

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.

What and When?

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.

Why should I attend?

  • Meet other patient groups facing similar challenges, share knowledge and tools.
  • Hear from patient groups who have faced those challenges and hear how they overcame them and what they learnt in the process.
  • We’ll provide a handbook full of resources that will guide you through the process of setting up a support group, links to information and useful contacts.
  • Genetic Alliance UK, Rare Disease UK and SWAN UK teams will be there, ready to share their expertise and discuss any questions. Our team has over 25 years of experience of providing support, information and campaigning for patients and families affected by genetic conditions.

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.

Can I take part?

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 ( or on 02078310883

I am interested, what do I need to do?

If you are interested in taking part then register your interest here

Registration closes on January 9, 2017.

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