The Erdheim-Chester Disease Global Alliance (ECDGA) is pleased to announce the addition of Nottingham University Hospitals NHS Trust in Nottingham, United Kingdom, as an officially recognized ECD Referral Care Center. Under the leadership of Dr. Mark Bishton, the institution has demonstrated the expertise, multidisciplinary readiness, and commitment necessary to meet the needs of the international ECD patient community.
Erdheim-Chester disease (ECD) is an ultra-rare, multisystem histiocytic disorder that requires coordinated, specialized care. The designation of a new referral center expands access to expert evaluation and treatment for patients across the UK and Europe.
Dr. Bishton and his team at Nottingham University Hospitals bring a comprehensive multidisciplinary approach, supported by specialists in hematology/oncology, endocrinology, nephrology, dermatology, ophthalmology, neurology, pulmonology, cardiology, interventional radiology, pathology, and counseling services. The center also maintains a pathologist experienced in the heterogeneous histopathologic features of ECD, enabling accurate evaluation and collaborative case review.
In their 2025 Care Center report, Dr. Bishton’s team noted the current management of 10 active ECD patients, including three new patients in the past year, participation in clinical trials, and involvement in national rare disease research initiatives such as the 2023 MRC Rare Disease Platform Node for Histiocytic Disorders (Histionode).
As part of the ECD Care Center Network requirements, Nottingham University Hospitals NHS Trust has committed to:
- Formulating treatment plans for new ECD patients within eight weeks of first evaluation,
- Providing expert consultation to other care centers,
- Participating in the ECD Registry (where applicable),
- Ensuring BRAFV600E genotyping capability, and
- Maintaining physician participation in ECDGA Medical Symposium activities.
“The ECD Global Alliance is delighted to welcome Dr. Bishton and his institution into the Care Center Network,” said Board President, Diane Schriner. “Their dedication to multidisciplinary excellence and ongoing research strengthens our mission to expand access to expert care and improve outcomes for all individuals affected by ECD.”
The ECDGA Referral Care Center Network now includes leading medical institutions around the world that demonstrate the highest standards of clinical expertise, collaboration, and dedication to patient-centered care.
For more information about ECD Care Centers or Erdheim-Chester disease, please visit www.erdheim-chester.org.