Our Work

Building Rare Communities

Last Reviewed 6/04/2016

Condition-specific patient groups often provide a lifeline to patients. They offer a source of information, opportunities for peer support, and a means to influence the development of effective services. For some conditions, such condition-specific patient groups are not available.

How can I get involved?

Are you a patient or a family member of someone affected by a genetic condition? Are you looking to create a support group for your/your relative’s condition?

We are recruiting patients to take part in our Building Rare Communities project. If you want help to develop a patient support group, need guidance on whether becoming a charity is the best way to go, want advice on how best to inform and support those affected by a genetic condition or want to raise awareness about your condition then do get in touch with Mariana Campos, via email ([email protected]) or telephone on 0220 7831 0883 by 16 December 2016.

Due to limited capacity, we will only be able to help new support groups where no other condition-specific support group exists. Please get in touch if you need more information and share this with anyone who you think might benefit from this support.

What is the Building Rare Communities Project?

In the Building Rare Communities project, we are working closely with patients and families across the UK to establish and develop support networks or patient groups, where no condition-specific support groups previously existed.   

The Building Rare Communities project has been developed following a highly successful pilot in Scotland:  Helping Scottish Patients has been immensely effective in meeting the complex information and support needs of patients and families with rare and genetic conditions.

What are the aims of this project?

  • To provide a sustainable source of information and support for patients and families affected by rare and genetic conditions;
  • To empower patients and families affected by rare and genetic conditions, giving them a voice to influence the services on which they depend;
  • To develop sustainable new patient networks or groups and ensure that patients and families affected by rare and genetic conditions across the UK will be better informed and supported by these networks/groups;
  • To enable health and social care professionals gain a better understanding of rare and genetic conditions and become a source of support and information to newly-diagnosed patients

If you want more information about the Building Rare Communities project (formerly known as Helping Patients project) please contact our Public Engagement Manager, Mariana Campos.







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