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3 July 2021

Help Genetic Alliance UK and the Scottish Government shape the Action Plan for Rare Diseases in Scotland

Most Covid-19 restrictions in Scotland have now been lifted but we know that the rare disease community still face challenges with diagnosis, care coordination, access to specialist care, treatment and drugs.

Genetic Alliance UK is supporting the Scottish Government to develop and implement a new Action Plan for Rare Diseases in Scotland – and they need you. If you live in Scotland and have a rare condition, or care for someone who does, you can get involved by joining Genetic Alliance UK’s Virtual Involvement Panel in Scotland and becoming a VIP (Virtual Involvement Panellist)

What is involved?

Virtual Involvement Panellists (our VIPs) will share their views and experiences to ensure future policy and service planning – and will receive:

  • Regular, informative e-newsletters with news about developments in health and social care services.
  • Invitations to take part in surveys and consultation events to shape policy and services in Scotland.
  • Priority access to Genetic Alliance UK’s programme of digital events and opportunities to become a blogger, vlogger or media contributor for Genetic Alliance UK.
  • Information on how you can take part in Rare Disease Day – the UK’s biggest awareness day so that no rare condition, no matter how rare, ever gets left behind.

What is the  Scottish Government’s Action Plan for Rare Diseases?

The Scottish Government has established a Rare Disease Implementation Board to oversee the implementation of the UK Rare Diseases Framework in Scotland. The priorities of the Framework include: helping people get a final diagnosis faster; increase awareness of rare diseases among healthcare professionals; better coordination of care; and improving access to specialist care, treatment and drugs.

The Scottish Government will develop a Rare Diseases Action Plan for Scotland and are working in collaboration with Genetic Alliance UK to ensure that the Plan is developed in consultation with people living with rare conditions in Scotland.

The Scottish Government’s vision in developing the Action Plan is to continue to improve the lives of people affected by rare disease by ensuring equity of access to the best possible patient centred care and support, so that patients can benefit from safe and effective healthcare in Scotland, empowering them to live their lives to their full potential and increase their wellbeing.

Over the course of the next six months, members of Genetic Alliance UK’s Virtual Involvement Panel will be provided with opportunities to get involved and to help shape Scotland’s Action Plan for Rare Diseases.

Could you be the Genetic Alliance UK’s next VIP and help shape the future of services for rare conditions in Scotland? Please register here or contact