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The Rare Autoimmune Rheumatic Disease Alliance

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Non-Genetic Rare Conditions: Challenges and Solutions Report

As part of RAIRDA’s ongoing campaign to improve care and treatment for people with rare autoimmune rheumatic diseases (RAIRDs), we collaborated with the Department of Health and Social Care to deliver a workshop on the challenges faced by people living with non-genetic rare conditions, including RAIRDs.

The workshop looked at the current issues with diagnosis, care and treatment, and aimed to generate ideas for solutions which can be implemented across the four UK nations.

The workshop was delivered with input from the rare disease implementation groups in Wales, Scotland and Northern Ireland, and was chaired by Dr Graham Shortland (Consultant Paediatrician and Syndrome Without a Name (SWAN) Lead, Cardiff and Vale University Health Board). Over forty stakeholders attended the workshop, including representatives from NHS England, the National Institute for Health and Care Excellence (NICE), the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS), patient organisations, and expert clinicians. 

RAIRDA’s hope is that the recommendations enclosed in this report will inform the work of policymakers across the four nations, and facilitate better use of resources to address the needs of people living with these conditions. 

The five key recommendations from the workshop are:

  • An increased focus on education and support for healthcare professionals to identify and manage non-genetic rare disease
  • Developing, and better resourcing, specialised networks for rare disease
  • Assessing what data is already available, and where it can be better used to fill in gaps in the understanding of care and treatment for people with non-genetic rare disease
  • Ensuring that the role of patient organisations is championed, to benefit both patients and healthcare professionals
  • Ensuring that GPs and other primary care professionals are able to effectively and confidently refer patients to secondary care. 

Please read the full report for more information.

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