South and Central West Midlands Cystic Fibrosis Paediatric Network News

Latest News

FEB 2019

'CF Today and Looking Ahead' - Saturday 30th March 2019 from 9.30-1.00 pm

By: Joanne Osmond

An interactive session for People with CF, Parents and Carers with talks by members of the CF Community, doctors and other CF health professionals

SEP 2018

Opening of new Rare Diseases Unit at Birmingham Women's and Children's Hospital - Waterfall House

By: Joanne Osmond

We're very proud to be home to the UK’s first rare diseases centre for children. The centre, located in Waterfall House - our £37.5million clinical building, is due to open in 2018. The rare disease centre has been generously funded by donations to the Birmingham Children’s Hospital Charity’s Star Appeal, which raised £3.65million for the cause. We treat approximately 9,000 children and young people with more than 500 different rare diseases from across the UK and have 11 highly-specialised services. The centre means that we will be able to offer our rare disease children and young people highly coordinated multidisciplinary and multi-specialty rare disease clinics together with peer support and consistent access to research, information and treatment. We are proud to be redefining the best care from a 'one-size-fits-all' to a patient-centred approach in which we help children and families with rare diseases lead the best quality of life possible.

SEP 2018

A Workshop for Parents/Carers of Babies and Young Children on Monday 17th September 2018

By: Joanne Osmond

An opportunity for parents/carers of babies and young children with cystic fibrosis to come together to share experiences, discuss topical subjects, issues or situations and learn about any new developments in the management of CF.