30 Jan 2020
Big Plans for SDH Syndrome Community
SDH Support UK will be run by AMEND but will have its own website, information resources, patient experience films and social media forums.
- Patient Experience Films: three short films are already in production with filming beginning in early February. The films, focusing on Diagnosis, Treatment and Living with SDH, will be available to view in April and feature 3 patient members of AMEND
- Website: a new website specifically for families affected by SDH syndromes in the UK will begin development shortly, with a view to being available by Autumn 2020
- Patient Information: a new patient information booklet about SDH syndromes is currently being drafted with the help of the AMEND Medical Advisory Team and special guest editors. This will be available free to download or order in hard copy when finished
- Clinic Resources: leaflets and posters will be available for NHS clinicians to order shortly. These will offer first line information and contact details for SDH Support UK
- Social Media Forums: a public Facebook Page and private Facebook Group have already been developed. Search for SDH Support UK
Keep an eye out for more news in due course.