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Histio and MSK – Involved and Supportive

As a patient advocacy organization, the Histiocytosis Association is no stranger to working closely with hospitals or medical organizations within the US and around the world. In fact, we work with as many as we can. There are some over the years that we’ve collaborated with time and time again. One of those is the Memorial Sloan Kettering Cancer Center (MSKCC). In this post we want to recap for many people who know and especially those who don’t, some of the recent collaborations the Association has had with MSK, and how we are working together for the future of histio care.

In just the past few years, we have made great strides with the help of expert physicians and investigators from MSK . We have hosted several webinars, including “Focus on Eyes & Vision” with Dr. Jasmine Francis, MD, “Adult LCH and PLCH” with Omar Abdel-Wabib, MD and Eli Diamond, MD, and a very special webinar on survivors and caregivers with Eli Diamond, MD and NIH.

Logo for the memorial sloan kettering cancer center (MSK)

Through all of these webinars, we share in the research conducted within and beyond MSK by these experts, with the wider histio audience. MSK itself is no stranger to wide audiences. Its cancer center serves patients all over the country and even the world. A few of our ambassadors even get care remotely or in person from a physician at MSK even though they don’t live in New York. More often, we see larger institutions open up to telemedicine and collaborative care with local physicians so patients do not have to travel as often but can work with those who are most familiar with histiocytosis.

The collaboration extends beyond just resources and education, but MSK has done a lot of work to help with specialized treatments, such as clinical trials for care or pharmaceuticals, and genomic profiling.

Over the years we have worked with MSK’s Make-An-Impact. The Make-an-IMPACT Initiative is a rare-cancer global outreach initiative from MSK that provides free genomic profiling for patients with Langerhans Cell Histiocytosis (LCH), Erdheim-Chester Disease (ECD), Rosai-Dorfman Disease (RDD), Juvenile Xanthogranuloma (JXG), and Histiocytic Sarcoma (HS). The world-class genomic profiling aims to identify genetic mutations in tumors. These tumors often harbor mutations in BRAF or related family of genes and may respond to drugs that target these genetic alterations. You can click here for more information and to take part.

In addition to the webinar we hosted with Eli Diamond, MD, he also wrote a full article that inspired the webinar which goes into the caregiving of those with ECD specifically.

Finally, the histio community participated in a recent study at MSK focused on obtaining FDA approval for the use of Cobimetinib with ECD and other histiocytic disorders. This is one example of several clinical studies that are being conducted by the histiocytosis team at MSK. Cobimetinib received approval by the FDA just last fall, and the Association team was grateful to be able to share the trial opportunity and the successful outcome with all of you. You can view the full press release from MSK here for more information on Cobimentinab and its impact on histio treatment.

Without collaboration and partnership, we would not be as far along as we are today. For being so rare, this in-depth collaboration across all stakeholders in the histio community is inspiring and provides a lot of hope for curative treatment and quick diagnosis in the future. We are humbled to say that this example with MSK is just one example – as this shows the tremendous support the histio community receives from hospitals, industry, patient-advocacy, researchers, and beyond, around the world.

We hope to see you at MSK on 9/23 for our upcoming Patient-Family Conference on Histiocytic Disorders!