We have supported Rare Disease Day for many years and this year is no different. The theme for 2019 is:
‘Bridging health and social care’. Focusing on bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day.
CDH UK will be releasing a survey around this topic, as many of our families experience issues surrounding this topic and we have and still are helping to bridge these gaps for CDH patients and their families, for instance with our Financial help schemes and other initiatives and support. This also fits in nicely with our workshop later this year focusing on the challenges around Transition of care from Paediatric healthcare settings into the community and later in life into adult services.
In addition, we ask you all to join in with face painting (see image below) to highlight Rare Diseases on Social Media on February 28th by taking a picture and post them on our facebook page and your own with the hashtags #CDH #RareDiseaseDay #ShowYourRare
You can contact us for further details by emailing email@example.com