For families with disabled children.
Contact have some useful information and links for advice to help families with disabled children navigate through the confusion about the virus and its impact on them. They have collected it together in one place on their website to make it easy to find.
Visit the Contact site here.
Support for sick children.
Wellchild have a wealth of information and tips on their blog to help children during the coronavirus, including ten ways to keep my child with complex needs safe and seven rules for managing carers at home.
Visit their blog here.
Great Ormond Street Hospital for Children.
This information hub has brought together useful information from GOSH and their latest news in one place. It includes speciality information sheets from each of their departments as well as FAQs related to children and young people who are sick and their families.
Visit information hub here.
Please take a moment to read this important announcement from Mallinckrodt Pharmaceuticals in regard to the clinical trial of Adrabetadex for NPC-1. We recognise that this may be a surprising and disappointing development for our community as a whole. Please be assured that we are advocating for further, clearer information and will follow up with our response and next steps shortly.
Sandra Cowie, President, INPDA
Joslyn Crowe, Executive Director, NNPDF
Toni Mathieson, Chief Executive, NPUK