Histiocytosis at Memorial Sloan Kettering

Leading research and expert care for patients with histiocytosis

[Histiocytosis at Memorial Sloan Kettering @MSK_Histio]

New article (open access, available to all) about histiocytosis and the brain. The product of a collaboration between MSK and our French colleagues. @Histiocytosis @ECDGA

https://t.co/yXt49ETHlr

[Gaurav Goyal @GauravGoyalMD]

Fun fact: Season 2, Episode 11 of House had a case that was eventually diagnosed as ECD, although the presentation in the episode was more acute than true ECD, which typically tends to be a chronic disorder although with high symptom burden. 9/12

[Rare Disease Day @rarediseaseday]

Today is #RareDiseaseDay!

There are over 6⃣0⃣0⃣0⃣ rare diseases

🌏 300 million people live with a rare disease accross the world

Rare diseases currently affect 3.5% - 5.9% of the worldwide population👨‍👩‍👧‍👦

Learn more about what is a #raredisease

👉https://t.co/4axpDU3ofy

[National Comprehensive Cancer Network (NCCN) @NCCN]

New NCCN Guidelines for histiocytosis, published the day after #RareDiseaseDay, provide evidence and expert-consensus for diagnosing and treating the 3 most-common forms of histiocytosis in adults. Learn more at https://t.co/uqnxKVG7q7. #NCCNGuidelines #histio #HistioAwareness

[Gaurav Goyal @GauravGoyalMD]

The first @NCCN guidelines for histiocytic disorders are out! This is a major advance in care for patients with ECD, LCH, and RDD. Learned a lot through the process of formulating new guidelines! Big thanks to all collaborators and NCCN. #RareDisease @ECDGA @Histiocytosis #histio

[ECD Global Alliance @ECDGA]

Please remind your #histio patients to register for the upcoming live webinar - Histio Patient Needs: A Focus on the Eyes & Vision, cohosted with @MSK_Histio and @Histiocytosis.
https://t.co/QX26zHZ3Z4
#ErdheimChester #histiowarrior

[ECD Global Alliance @ECDGA]

Patients are encouraged to register for the upcoming live webinar - Histio Patient Needs: A Focus on the Eyes & Vision, cohosted with @MSK_Histio and @Histiocytosis.
https://t.co/80tVgVIG8D
#histio #ErdheimChester #histiowarrior

[Histiocytosis at Memorial Sloan Kettering @MSK_Histio]

First rare histiocytic disorders tumor board yesterday! Thanks to panelists for their wisdom and scholarship. More RHD conferences to come. @jpcrsc @HistiocyteSoc @GauravGoyalMD

[ECD Global Alliance @ECDGA]

Medical professionals are invited to register for this free webinar on Nov. 19 at 11 am EST. Erdheim-Chester Disease: A review of updated guidelines in the molecular era. https://t.co/z3T1loc4LX @MSK_Histio @GauravGoyalMD @HistiocyteSoc

[Histiocytosis at Memorial Sloan Kettering @MSK_Histio]

New study from the MSK ECD Registry study about advantages of PET scan imaging for ECD. #ECDGA

https://t.co/3KCzmml3ki

[Histiocytosis at Memorial Sloan Kettering @MSK_Histio]

Research about ECD caregivers highlights the difficulties in providing support for patients navigating a rare disease.

https://t.co/IIu91MWMe1