Erasmus University Medical Center in Rotterdam joins the ECD Referral Care Center network of hospitals skilled in treating Erdheim-Chester disease patients.

The Erdheim-Chester Disease (ECD) Global Alliance welcomes Erasmus University Medical Center in Rotterdam, Netherlands into its Referral Care Center Network to help Erdheim-Chester disease patients.

Leading this ECD-knowledgeable team is Dr. Jan Am van Laar, Associate Professor Clinical Immunology, Department of Internal Medicine, Erasmus MC University Medical Center, in Rotterdam, the Netherlands. The group of 14 specialists representing this center has seen six patients fighting the rare blood cancer thus far.

The center will be part of the recent push to improve rare cancer care in this region. The Dutch Cancer Society (KWF) has invested five million euros into rare cancer research starting in 2021.

“We see that the survival rates for many common forms of cancer have increased considerably over the years, but patients with a rare form of cancer benefit even less from new developments,” says KWF director Johan van de Gronden. “Knowledge about rare rumors is still widely spread across different hospitals.”

Researchers and practitioners from UMC Groningen, UMC Utrecht, Erasmus MC, Amsterdam UMC, and Maxima Medical Center will therefore share more internal information about rare forms of blood cancer, for example. This data collection and the development of ultra-sensitive blood tests make it possible to better determine which traces rare tumors leave behind in the blood and organs.

With this, KWF hopes to improve the prospects for a large group of patients in the coming years.

(cited from a recent article written in Dutch)

Just this month, Dr. van Laar and cohorts published the article Spectrum of histiocytic neoplasms associated with diverse haematological malignancies bearing the same oncogenic mutation. Emerging centers such as this help bring more knowledge and access to care for ECD patients around the world.

The ECD Global Alliance created the ECD Referral Care Center Network in 2015 in order to serve this patient group with a broader reach, encouraging an expert, higher standard of care, and regular consults to aid local physicians. Including the Netherlands hospital, there are now 34 centers serving the ECD population worldwide.

Learn more about the ECD Referral Care Center network at www.erdheim-chester.org/care-centers.