What We Stand For
We are committed to improving the state of regional policies on rare diseases in the South West and beyond. Founded in 2021, South West Rare Disease Policy Group was created by Plymouth University, the UK’s 15th largest university; ranked as a world-leading and internationally excellent research institution by the REF.
With the introduction of new UK Rare Diseases Framework it is time to review what was done since 2013 and how these changes affected lives of patients with rare diseases and their families and caregivers. It it important to have an honest discussion on what went well and what aspects still require improvements.
Our aim is to provide a place where all stakeholders from the South West region and beyond could meet, to identify and discuss current and future challenges faced by patients with rare diseases. These open discussions can help to develop robust policies. These policies will ensure that top-quality care for patients is and advance research into viable therapeutic options for rare diseases.
Our Research Team
The South West Rare Disease Policy Group is staffed by a team of dedicated individuals with extensive experience in the rare diseases field.
Disease Directory provides reliable and up to date information on the symptoms, causes and prevalence of rare diseases and medical conditions. Also you will find links to UK specific resources (if available).
If you would like to take part in our research, help us to create change or find out more about how you can support our work, please contact us.
Enhance Policy Responses: Patients with rare diseases are faced with a number of challenges. This includes accessing treatment, securing the best care possible, finding support and sourcing appropriate local services. But most importantly get the right diagnosis fast. These issues often affect stakeholders (including researchers, medical professionals and advocacy groups) too. We hope to influence and shape policy change, so that collective and evolving needs of rare disease patients are met.
Raise Awareness: Policies around rare diseases, their diagnosis and management directly impact patients with rare diseases and their families. They also affect caregivers, medical professionals and researchers. With this in mind, it’s vital to raise awareness of the concerns those affected by rare and genetic conditions have in regard to policies and procedures in place. As such, we work to encourage and foster collaboration between patients and the medical community to create positive change.
Inform and Educate and Transform: We strive to inform the South West’s rare disease community about policy debates and the policymaking process. It’s crucial to keep the community abreast of opportunities to change and innovate the way rare conditions are treated, diagnosed and researched, so they can ensure their needs are met. By uniting the voices of patients and professionals, there’s scope to transform policy landscape for rare diseases diagnosis, treatment, and research.
About Our Website
The brand new website for the South West Rare Disease Policy Group was designed and developed by The Web Design and SEO Company, a leading UK company specialising in website development, SEO and digital training. The University of Plymouth approached The Web Design and SEO Company to help bring our vision alive. We asked them to create a new online portal, to include a directory of rare diseases as well as a community forum.