The first Children’s Rare Disease Centre in the UK is being created at Birmingham Children’s Hospital!
Everything we do is aimed at improving the care delivered to our children. Given that we treat approximately 9,000 children with over 500 different rare diseases. It was very important to us that we developed a rare disease strategy to address the key improvement areas highlighted by Rare Disease UK.
Therefore, we want to open the UK’s first holistic Paediatric Rare Disease Centre where multidisciplinary and multispecialty rare disease clinics will take place. This new centre will offer:
- Coordination of care
- Peer support
- Better access to research
- Better access to information
- Access to any available treatment(s)
We are, and have been, consulting with children and patient support organisations throughout the process and hope to open this new centre in late 2017.
Our paediatric rare disease centre will change the care we deliver to our children with rare diseases. Transforming it from a one-size fits all method to a bespoke patient-centred approach in which we help children and their families lead the best quality of life possible, thereby enabling them to live their lives to their full potential. The rare disease service will lead to development of patient guidelines to empower local teams and the transition to the University Hospital Birmingham Rare disease centre will also make the service seamless.
Whilst our level of care for our patients with rare diseases is excellent, our facilities do not match and many of these patients have to attend appointments on different days in different parts of the hospital. This is not only time consuming but it can leave families feeling lost and isolated.
With your help, our new Star Appeal will fund the UK’s first Rare Diseases Centre for children, providing a single place within the hospital for all assessment, diagnosis, treatment, information, research and also valuable peer-to-peer support.
Please help us light the way for children with rare diseases, so we can provide them with coordinated care, treatment and support, but most importantly hope.
To support our Star Appeal visit the web page or text STAR to 70800 to donate £5 (standard network rates apply).
- NHS Choice
- Rare Disease UK
- EURODIS (Rare Disease Europe)
- NHS Specialised Services
- National Institute of Health Office of Rare Disease Research