News & Events

Building Rare Communities (Autumn 2019)

Last Reviewed 19/07/2019

By Jurrat Hasan

We are excited to announce the relaunch of our ‘Building Rare Communities’ project!

The project aims to develop, support and strengthen the genetic and rare disease patient community by:

  • supporting the establishment of new condition specific support groups/organisations;
  • helping the growth of existing small support groups/organisations through various development and upskilling programmes.

Building Rare Communities (BRC) had a successful run in 2017, when we supported the establishment of 17 new rare disease patient groups. We were delighted to learn of the impact the project had with an overwhelming amount of positive feedback. We know there are more small support groups/organisations out there looking to set up their own communities and we want to support and empower them to be able to do so with this project.

We will be launching the first programme of the project, called Building Rare Groups (BRG), this autumn with the launch event and induction taking place in Birmingham on 12 October 2019. The programme will comprise a suite of learning modules completed over a 12-week course and will focus on enabling participants to develop good governance and skills needed to build a sustainable voluntary organisation. BRG will support individuals and small groups in building competence, authority and capacity.

Sign up for the autumn programme has now closed. Please keep an eye on our website and social media channels for future opportunities.

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