ECD Global Alliance @ECDGA
The ECD Global Alliance is the only nonprofit worldwide solely dedicated to people living with #ErdheimChester disease #histocytosis #histocyte #raredisease erdheim-chester.org DeRidder, LA | Global Joined April 2014-
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ECDGA Founder Kathy Brewer attended this week's European Consortium for Histiocytosis (ECHO) meeting on the status of open research projects. Opportunities such as this one are critical in moving the science forward. #Research #Science #ErdheimChesterDisease #ECDGA #Histocytosis
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Join us for our next webinar, Under the Microscope: Diagnosing Histiocytosis and Genetics , tomorrow at 11 am ET! Register now at us02web.zoom.us/webinar/regist….
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Join us for our next webinar, Under the Microscope: Diagnosing Histiocytosis and Genetics , on October 10th at 11 am ET! Register now at ow.ly/j9bn50PTrT7.
Register today: us02web.zoom.us/meeting/regist…
Erdheim-Chester Disease Global Alliance is now accepting Letters of Intent (LOIs) for the 2023 $50,000 Early Career Investigator grant. LOIs are due by October 2, 2023. Interested individuals can visit ow.ly/5m8x50PIrRk more information.
Erdheim-Chester Disease Global Alliance is now accepting Letters of Intent (LOIs) for the 2023 $50,000 Early Career Investigator grant. LOIs are due by October 2, 2023. Interested individuals can visit ow.ly/k7BG50PIrPL more information.
As #ECDawarenessWeek comes to a close, we need to continue spreading the word! Keep telling your story to the world, they will listen! Together we can make a difference! #ENDecd #Awareness #TogetherWeCan
One of the most common symptoms of ECD is bone pain in the legs and arms. Yet not every patient experiences this. Did you know ECD can affect your entire body?
Share this video explaining ECD with friends, family, and medical professionals. Big thanks to Dr. Gaurav Goyal and Dr. Ronald Go @MayoClinic! ow.ly/R3pU50PKmbU<
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13 Followers 56 Following I wanna raise awareness for my rare cancer Erdheim Chester Disease. thousands of doctors and patients are still unaware and need to know. I am only one person.
Jorge Irizarry-Caro, .. @JIrizarryCaroMD
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Beacon for Rare Disea.. @RareBeacon
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Gaurav Goyal @GauravGoyalMD
835 Followers 152 Following Faculty at @ONealCancerUAB, previous hem-onc fellow @MayoClinic- interested in lymphoma, histiocytosis, HIV-cancers, health outcomes. Tweets are my own opinions
David Fajgenbaum, MD @DavidFajgenbaum
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69K Followers 2K Following The American Society of Hematology (ASH) is the world's largest professional society concerned with the causes and treatments of blood disorders.
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Aishwarya Ravindran, .. @aravindranmd
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269 Followers 324 Following To promote the utilization of Physician Assistants in the delivery of the best possible care available to people with cancer and related diseases
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ECHO - european histi.. @Echo_Histio
63 Followers 58 Following We are dedicated European professionals working to improve the medical care and knowledge for patients with histiocytosis.
Histio Hellas @AHistio
48 Followers 144 Following Η Histiocytosis Hellas αποτελείται από μία ομάδα γονέων, ασθενών, φίλων και ιατρών που ασχολούνται με την σπάνια ασθένεια της Ιστιοκυττάρωσης.
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48 Followers 88 Following TDF is on a mission to share love, hope, and joy with individuals impacted by Histiocytosis around the world!
Joburg To Cape Town @JHBtoCT
10 Followers 6 Following Jono and Anthony will be cycling from Johannesburg to Cape Town to raise awareness and funds for Erdheim Chester Disease. 1500km in a planned 10 days.
Juvianee I. Estrada-V.. @IJuvianee
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CDC @CDCgov
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Such great turn out for our MEKi on ECD work! Thank you to all the group and coauthors for making this possible Particular thanks for amazing mentors @GauravGoyalMD @RonaldGoMD & @JithmaA Next step… manuscript! #ASH22 #ASHTrainee
@ECDGA @MSKCancerCenter @MSK_Histio @ASH_hematology It was great to meet you all!
Plan to stop by at the #ASH-FDA session on approval of cobimetinib in histiocytic neoplasms- have we achieved the target yet? @Histiocytosis @HistiocyteSoc @ECDGA @ASH_hematology @US_FDA
Happy Holidays to all! Καλές Γιορτές με υγεία! #Christmas #December #viral #socialmedia #histiocytosis @histio @histiocytosis @histiocyteSoc @MSK_Histio @histioUK @Echo_Histio @ECDGA @Ferdeor11 @Lils_HLH @Erics_Journey @AILEonlus
📰 L'@hbellvitge, designat centre de referència espanyol en la malaltia d'Erdheim-Chester per l'@ECDGA. ➡️ Ara l'#hospital forma part de l'organització dedicada a la conscienciació i #investigació de la #malaltia. 👇 A @elperiodico elperiodico.cat/ca/sanitat/202…
📰 El @hbellvitge, designado centro de referencia español en la enfermedad de Erdheim-Chester por la @ECDGA. ➡️ Ahora el #hospital forma parte de la organización dedicada a la concienciación e #investigación de la #enfermedad. 👇 En @elperiodico elperiodico.com/es/sanidad/202…
@GauravGoyalMD @Histiocytosis @ECDGA @MSK_Histio @HistiocyteSoc Phenomenal! Thanks for the hard work of everyone!
BREAKING NEWS!🔥 FDA approves cobimetinib for histiocytic neoplasms! This is a huge victory for this underserved population, and highlights that clinical trials are feasible for ultra-rare diseases. bit.ly/3Dn4Lwk @Histiocytosis @ECDGA @MSK_Histio @HistiocyteSoc
An exclusive coming UR way on #HealthcareUnfiltered. First-time appearance by @AleckAmalia the better half @AaronGoodman33 as they come together to share life stories, how they handle day to day stuff, Aaron’s guitar & tacos, and so much more. This one for the ages.
We’re so proud of Anya’s tenacity. #TBI @ECDGA
It’s been one year since Anya Magnuson was struck by a vehicle in Minneapolis — and she’s also endured a lengthy battle with a rare form of cancer. After months of surgeries and therapy, she returned to the hospital to thank the people who saved her life. mprnews.org/story/2022/10/…
With significant advances in the last decade, Erdheim Chester disease is highly treatable condition if recognized promptly. @ECDGA @Histiocytosis @IJuvianee #raredisease
Rare diseases don't just exist on exams! "Doc I can't stop peeing" If you don't believe me come work with me in my clinic. A disease that literally any specialty could encounter and is now super treatable. Bonus points for mutations + treatment
Para pacientes adultos con Histiocitosis sigan a @GauravGoyalMD que hoy dio una masterclass sobre @ECDGA para pacientes y para la comunidad científica. Tiene en marcha in estudio sobre pacientes y sus síntomas #LCH #RDD #ECD #Spain #sehop #SIOP2022 #histiocytosis #orasociacion
@GauravGoyalMD masterclass on #histiocytosis today talking for @ECDGA patients and the scientific community #LCH 🛎Ongoing study for Histiocitic disorders @uabmedicine #globalhistio @Histiocytosis #orasociacion
Excited to co-lead this work w/ the amazing @AHazimMD Grateful for efforts & mentorship of the Histiocytosis WG @MayoHemeOnc @uabmedicine 🌟Lack of pathognomonic bone lesions doesn’t rule out ECD 🌟There are phenotype and genotype diffs in Non-classical ECD @MayoMN_IMRES
Newest @MayoClinic article is out in time for #ECDAwarenessWeek! @AHazimMD : "...The absence of knee bone involvement should not dismiss the possibility of a diagnosis of ECD.” TY @GauravGoyalMD @AAcosta_MedMD @GordonRuan @JithmaA @aravindranmd et al! ow.ly/BQ7P50KHxQq
ECD is a rare blood cancer. Community Awareness Champion Becca Winthrop and @UFHealth's Dr. Ali Ataya are spreading the word. Ataya is lead physician of UF's ECD Referral Care Center, 1 of 35 @ECDGA Centers of Excellence. Learn more: erdheim-chester.org #ECDAwareness
Neurology Podcast: In today's episode, Dr. W. Oliver Tobin of @MayoClinicNeuro discusses histiocytic diseases affecting the CNS. Listen now! bit.ly/3CfwWOD #NeuroTwitter
@PPALSorg @SanfordCoRDS @ECDGA is soliciting Letters of Intent for funding 2 research projects focused on the study of #ErdheimChesterDisease Up to $200,000 USD per project; LOI due 10/10/22; check out erdheim-chester.org/funding-resear… #raredisease #rarecancer #youngresearchinvestigators
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