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Rogel Cancer Center named referral care center for the ultra-rare blood cancer Erdheim-Chester Disease

Date Visible: 
06/15/2021 - 2:30pm

Media contact: Nicole Fawcett, 734-764-2220 |  Patients may contact Cancer AnswerLine™ 800-865-1125

Only Michigan hospital to partner with Erdheim-Chester Disease Global Alliance to serve patients statewide

Rogel Cancer Center Building from the front, showing the entrance and blue summer sky

ANN ARBOR, MI—The Rogel Cancer Center has been selected as part of the Erdheim-Chester Disease Global Alliance (ECDGA) Referral Care Center network.

Having an Erdheim-Chester Disease (ECD) referral center located in this region will help the 12 Michigan-based patients currently registered with ECDGA and will also allow access for more patients seeking a possible ECD diagnosis in the future. The partnership is designed to ensure collaboration, education, improvements in early diagnosis, administration of effective treatments, and support for the ECD patients in this part of the country.

Erdheim-Chester Disease is a type of blood cancer characterized by excessive production and accumulation of specific cells whose normal function is to fight infections. These cells, called histiocytes, infiltrate the loose connective tissue of the body, causing it to become thickened, dense and fibrotic. It is so rare that few doctors have ever treated anyone with this disease.

“Erdheim-Chester disease is extremely rare, which means it’s critical for patients to be able to find the right expertise to ensure appropriate treatment. We are pleased to be the only ECD referral care center in Michigan and look forward to coordinating care for patients throughout the state and region,” says Asra Ahmed, M.D., assistant professor of internal medicine at Michigan Medicine and the lead physician for this initiative.

The ECDGA recognizes 35 centers of excellence across the globe. All institutions are required to communicate and collaborate with one another to ensure patients are receiving the most up-to-date treatment options and best care available. Another vital aspect of the ECD Referral Care Center network is making certain that in the event a patient cannot travel due to their illness, the ECD physicians at these centers can consult on the patient’s case with their local doctor.

Because the disease can impact multiple parts of the body, the Michigan Medicine team brings together specialists from diverse fields of medicine. In addition to Ahmed, a hematologist/oncologist, the team includes pulmonologist Wassim Labaki, M.D., nephrologist Michael Heung, M.D., dermatologist Frank Wang, M.D., ophthalmologist Jonathan Trobe, M.D., neurologist Yoshie Umemura, M.D., endocrinologist Joanna Spencer-Seagal, M.D., interventional radiologist Sahira Kazanijan, M.D., cardiologist Salim Hayek, M.D., pathologist Noah Brown, M.D., and psychologist J. Todd Arnedt, Ph.D.

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