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Genetic Alliance UK in Scotland:

Scottish News

  • Natalie Frankish joined Genetic Alliance UK in September as the new Development Officer for Scotland. To find out more about Natalie's work click here or get in touch
  • On 2nd March 2010, to mark Rare Disease Day in Scotland, the second meeting of the Rare Disease UK campaign took place at the Scottish Parliament. The event was very well attended with over 120 delegates from various backgrounds, including several MSPs. To find out more about this event and the Rare Disease UK campaign click here.
  • A member of our virtual panel, Sophie Dow, has written an article about her journey towards getting a diagnosis for her daughter Annie. Annie has an incredibly rare chromosomal disorder called DAMP and her story illustrates how important it is for families affected by rare conditions and researchers to work together. Professor Gillberg, one of the articles authors commented: "We believe that collaboration such as this between family and researchers working together in the presentation of new results to readers of a scientific journal, is a novel and helpful way of presenting a case. We hope that it will be only the first in a new category of reports, authored not by ourselves, but by other families and other research groups."  To view the full article click here.
  • The Scottish Clinical Genetic Forum is a network that aims to help Scotland's four NHS Clinical Genetic Services offer services that meet patient needs.  It aims to help services develop innovative, seamless services and to integrate patient and public views into service planning and care guidelines.  The Forum regularly includes representation from the four Clinical Genetic Services, the Genetic Alliance UK and Gengage, National Services Division and the Scottish Government Health Department, and other representatives from overlapping healthcare specialities or patient support organisations participate as appropriate.  The Forum publishes guidelines and documents here.   
  • On 3rd March 2009 the inaugural meeting of the Rare Disease UK campaign took place at the Scottish Parliament. This event was entirely organised by Genetic Alliance UK in Scotland. It was a very positive meeting and very well attended. You can find out more about the day here.
  • Genetic Alliance UK in Scotland have produced a new patient leaflet encouraging patients living in Scotland to get involve with the work that Genetic Alliance UK is doing. Download a copy now:  Your Genes, Your Experiences.
  • Genetic Alliance UK in Scotland held an extremely successful patient engagement event in December to feed into the Scottish Government's "Patients' Rights: A Public Consultation on a Patients' Rights Bill" for users of the NHS in Scotland. Read more about this event.
  • In 2009, the Scottish Government announced updates to the management of women with a family history of breast and/or ovarian cancer in Scotland.  These give information on risk assessment, screening and genetic test eligibility.