Publications by authors named "Alaxandra Blackwell"
Orphanet J Rare Dis
October 2024
Article Synopsis
- Many individuals with rare diseases, like Epidermolysis Bullosa (EB), experience difficulties in getting timely diagnoses and specialized care.
- EB affects about 1 in 20,000 people, and challenges can start during pregnancy.
- In Australia, the National Epidermolysis Bullosa Dressing Scheme (NEBDS) provides important antenatal education and support, particularly highlighted through two case studies of families with EB Simplex (EBS) in regional areas.
