In 2017, we set up a Scottish Working Group to focus on Scotland-specific PCD issues. Founded by our two committee members and Scottish representatives Edel Clough (Adult Rep) and Susi Shanks (Child Rep), alongside other brilliant volunteers such as Katie Vance and Shelley Heesom, this working group is working to raise awareness of PCD in Scotland and to advocate for specialist PCD care. They can be contacted at [email protected] and are always keen to connect with fundraisers, researchers and those with interests in PCD in Scotland.
What we do
- Annual Scottish Family Day (2017-2019)
- Kiltwalk – Annual fundraising event for PCD Support UK
- Members of Scottish Cross-Party Group on Rare Diseases
- PCD awareness events (e.g. in connection with The Mill Lab)
- Attend the Rare Disease Day Scotland event on an annual basis
- Provide talks to allied health students at Scottish Universities (e.g. physiotherapy)
Working with existing specialists in Scotland, we are aiming to grow our Scottish membership and improve access to care for children and adults with PCD in Scotland. At present, we are awaiting the outcome of a Scottish proposal for a dedicated diagnostic and clinical service for PCD (which is on hold due to COVID-19).
We know that access to specialist PCD care in Scotland can be inconsistent and that many people feel isolated as a result. We encourage anyone living in Scotland that’re affected by PCD to get in touch, so that we can add you to our network. We are always looking for volunteers to help with our advocacy work, whether this is providing social media support, helping with our website or providing support with particular skills such as legal advice, fundraising support – or anything you think we might be missing!