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Do you want to improve the lives of people with rare, genetic and undiagnosed conditions in Scotland?

If you live in Scotland, are affected by a genetic, rare or undiagnosed condition (or care for someone who does) and are keen to help shape the future of health and social care services then we need you for our new Virtual Involvement Panel.

Virtual Involvement Panel

Our Virtual Involvement Panel will be at the heart of our work in Scotland. The Virtual Involvement Panellists (our VIPs) will share their views and experiences to ensure future policy and service planning for rare, genetic and undiagnosed conditions in Scotland meets their needs.

Benefits of being a VIP

As one of our Virtual Involvement Panellists, you will receive:

  • Regular, informative e-newsletters with news about developments in health and social care services.
  • Priority access to Genetic Alliance UK’s programme of digital events.
  • Opportunities to become a blogger, vlogger or media contributor for Genetic Alliance UK.
  • Invitations to take part in surveys and consultation events to shape policy and services in Scotland.
  • 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 expected of our VIPS

  • Share your experiences in a constructive way, focusing as much on how to solve problems as identifying them.
  • Work collaboratively with other VIPs so everyone gets a chance to share.

Time commitment

There will be two Virtual Involvement Panel events a year with various opportunities in between to share your views. There is no minimum commitment as we know people have huge demands on their time, but we are looking for people who want to actively share their views. If you just want to keep up-to-date with our work you can sign up for our mailing list instead.

How to join the Virtual Involvement Panel

To sign up for the Scottish Virtual Involvement Panel please complete our registration form and we will be in touch soon.

For more information please email [email protected]create new email

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