Past project: Facilitating Networks

Facilitating Networks of Expertise with Patient Support Groups

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The Facilitating Networks Project sought to address the difficulties that children, adults and families with rare genetic disorders experience in receiving good information and optimal healthcare for their condition.

The project finished in November 2011 and produced a report on the project containing our findings.

Genetic Alliance UK Facilitating Networks project report

Hypomelanosis of Ito booklet: Online readable version : Printable version

Management of Cerebral Cavernous Malformations: Online readable version : Printable version

The project was a pilot scheme working with four condition areas, grouping some of our smaller member groups together to benefit more than one condition at a time. The condition groups who participated were:

  • Conditions on the Ras-mapk pathway; including Costello Syndrome, CFC, Neurofibromatosis and Noonan Syndrome.
  • Rare neurological conditions, including Cavernous Angiomas and the inherited Ataxias.
  • Rare dermatological network for Hypomelanosis of Ito.
  • Rare Cancer network for Familial Adenomatous Polyposis of the Colon (FAP).

These groups of conditions represent rare disorders where support groups are small and inadequately resourced and where there are no clinical networks already in existence.

In total, the project has the potential to improve the information, care and services for approximately 50,500 people with rare genetic disorders in the UK.

The Aims of the Project

The primary aim of the project was to work with small Patient Support groups to facilitate the development of networks of health and social care professionals in order to improve information, care and services for patients and families affected by, or at risk of, rare genetic disorders.

Through the development of networks of expertise the Project:

  • Improved access for children, adults and families with rare genetic disorders to clinicians with experience and understanding of their condition.
  • Improved communication between healthcare professionals in relation to patients with rare genetic disorders.
  • Increased information available to patients and families by involving the experts in the clinical networks when developing patient information.
  • Improved the coordination of care for children, adults and families with rare genetic disorders.
  • Increased awareness and understanding amongst healthcare professionals by asking the clinical networks to provide guidelines and publish clinical updates and review papers.
  • Explored mechanisms for involvement in the commissioning of services and developed a protocol for establishing clinical networks that can be applied to other disorders and groups of conditions.
  • Examined the effectiveness of the pilots and benefits and implications for support groups and the families they represent, in partnership with clinicians.