Category list : Rare conditions
Stories with this category.
Epidermolysis bullosa is a rare genetic skin condition that has a deep social impact on people diagnosed with it. A literature review explores the impact of social support on their quality of life
“It’s really important to believe in yourself and put yourself out there,” Claire Adams tells me. The specialist rare disease nurse — more specifically, the specialist severe insulin resistance and diabetes nurse, and senior research nurse — speaks from personal experience.
Two new rare disease service nurses, whose roles have been developed with the help of patients, have been appointed by Birmingham Children’s Hospital.
The National Institute for Health and Care Excellence has recommended eculizumab (Soliris) for treating a rare life-threatening blood disorder called atypical Haemolytic Uraemic Syndrome (aHUS).