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<\/div><\/div><\/div>No results found.<\/div><\/div><\/div><\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div><\/p>\n","protected":false},"author":14,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"Press Releases <\/h2>\r\n
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2023<\/strong>\r\n\r\nErdheim-Chester Disease Global Alliance Awards $50k Grant to Study ECD<\/a>\r\nA new study will help better understand disease-causing cells within ECD.\r\n\r\n2022<\/strong>\r\n\r\nECDGA Applauds FDA Approval of Cobimetinib to Treat Erdheim-Chester Disease<\/a>\r\n<\/strong>Cobimetinib is an anti-cancer medication that was first approved for the treatment of melanomas.\r\n\r\nFirst ECD Care Center Opens in Spain<\/a>\r\nHospital Universitari de Bellvitge Becomes First ECD Global Alliance Referral Care Center in Spain!\r\n\r\nSecond ECD Center for Floridians<\/a>\r\nThe ultra-rare cancer group welcomes the second center of care knowledgeable in treating ECD in the Florida region this year. We welcome the Moffitt Cancer Center in Tampa, FL to the network!\r\n\r\nNew ECD Care Center Welcomed in Gainesville Florida<\/a>\r\nThe University of Florida Health joins the Erdheim-Chester Disease Global Alliance Referral Care Center network in Gainesville, Florida.\r\n\r\nUplifting Athletes Awards ECD Global Alliance Investigator Draft<\/a>\r\nA rare disease advocacy group was awarded an Erdheim-Chester Disease Research Grant to conduct a survivor study.\r\n\r\n![\"\"](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2022\/06\/Pegoraro-research-announcement--300x300.png\")
\r\n\r\n2021 ECD Research Grant Award Announcement<\/a>\r\nThe Erdheim-Chester Disease Global Alliance awards Young Investigator Research Grant to an Italy doctor to explore the genetic landscape of ECD.\r\n\r\n2021<\/strong>\r\n\r\n2021 Erdheim-Chester Disease Virtual Medical Symposium<\/a>\r\nTuesday, November 16, 2021: During this conference, medical professionals from around the world gathered to share scientific findings, patient outcomes, and case studies related to Erdheim-Chester Disease and other histiocytic disorders.\r\n\r\nRare Disease Care Network Now Serves Michigan Patients<\/a>\r\nThe Erdheim-Chester Disease Global Alliance is proud to announce the first ECD Referral Care Center to be located in Michigan.\r\n\r\nNCCN Guidelines for Histiocytosis Clarify Best Practices for Recently-Defined Cancers<\/a>\r\nNew clinical practice guidelines from National Comprehensive Cancer Network focus on workup and management for three main adult histiocytic disorders.\r\n\r\nA New Year, a New Care Center for Erdheim-Chester Patients in the Netherlands<\/a>\r\nErasmus University Medical Center in Rotterdam joins a network of hospitals skilled in treating Erdheim-Chester disease patients.\r\n\r\nEen nieuw jaar, een nieuw zorgcentrum voor Erdheim-Chester-pati\u00ebnten in Nederland<\/a>\r\n\r\n2020<\/strong>\r\n\r\nECD Caregiver Study Open at Memorial Sloan Kettering <\/a>\r\nAn observational study of informal caregivers (ICs) of patients with Erdheim-Chester Disease (ECD) and other histiocytic diseases is now recruiting. Caregivers of patients participating in the Registry for ECD Patients are specifically requested, if possible, and the study team can help facilitate registry enrollment.\r\n\r\nSan Diego Researcher Awarded 2019 ECDGA Research Grant<\/a>\r\n<\/strong>ECDGA awards a research grant to the University of California-San Diego to improve the understanding of ECD and LCH, in addition to generating hypotheses and models that will allow for novel drug screening standards.\r\n\r\nUniversity of Alabama at Birmingham Joins the ECD Care Center Network<\/a>\r\nThe ECDGA welcomes the O\u2019Neal Comprehensive Cancer Center at the University of Alabama at Birmingham (UAB) into the referral care center network that serves Erdheim-Chester disease patients worldwide.\r\n\r\n2019<\/strong>\r\n\r\nDrug Trial for Erdheim-Chester Disease Patients Now Recruiting<\/a>\r\nMD Anderson Cancer Center in Houston, Texas takes lead on Dabrafenib and Trametinib drug trial.\r\n\r\nFDA Granted Breakthrough <\/a>Designation<\/a>\r\nThe US Food and Drug Administration has granted a Breakthrough Therapy Designation to cobimetinib in the treatment of patients with histiocytic neoplasms (Erdheim-Chester Disease, Rosai-Dorfman, Langerhans Histiocytosis), who do not bear the BRAF<\/em> V600 mutation. This is not only a great step forward for BRAF<\/em>-negative ECD patients but for all histiocytosis.\r\n\r\nECDGA Raises Awareness at Endocrinology Conference<\/a>\r\nRepresentatives from the ECDGA attended the Endocrinology Society\u2019s annual conference in New Orleans to raise\r\nawareness of ECD among attending endocrinology specialists.\r\n\r\n2019 Rare Disease Day<\/a>\r\nOver the last 11 years, Rare Disease Day has become iconic as the global campaign for raising awareness of rare diseases among politicians, clinicians, researchers, and pharmaceutical companies. This year\u2019s theme is a testament to the challenges patients and families suffering from a rare disease face.\r\n\r\n7th Annual International Erdheim-Chester Disease Medical Symposium<\/a>\r\nThe ECD Medical Symposium was hosted by Dr. Lorenzo Dagna at the IRCCS San Raffaele Scientific Institute, Vita-Salute San Raffaele University. The Milan, Italy event was held 10-11 July featuring scientific advances and collaboration from around the world as it relates to this rare disease. This was the ECDGA's second event abroad.\r\n\r\n2018<\/strong>\r\n\r\nThe Erdheim-Chester Disease Global Alliance Raises Awareness of ECD at Hematology Conference<\/a>\r\nHematologists from around the world eagerly engage with ECDGA exhibitors to learn more about this rare disease.\r\n\r\nJuly 2018 University of Miami Medical Education Grand Round<\/a>\r\nThe University of Miami hosted a medical presentation to further residents\u2019 education in histiocytic disorders. The speaker, ECD Care Center lead Dr. Ronald Go of Mayo Clinic in Rochester, MN, discussed the features and management of Erdheim-Chester disease and other histiocytoses. ECDGA member, Teresa Mesa, represented the organization during this educational meeting.\r\n\r\nNew California ECD Care Center at Stanford <\/a>\r\nThe Erdheim-Chester Disease Global Alliance welcomes the Stanford Histiocytosis Program at Stanford Health Care as the newest ECD Emerging Care Center.\r\n\r\nJune 2018 Houston Methodist Medical Education Grand Round<\/a>|\r\nMedical residents and physicians at Houston Methodist Hospital in Houston, TX learned about Erdheim-Chester disease from ECD Care Center lead, Mark Heaney, MD, PhD from Columbia University Medical Center. Also in attendance was ECDGA President, Kathy Brewer.\r\n\r\nECD Patient Registry is Recruiting<\/a>\r\n<\/strong>The ECD Global Alliance announces the launch of the Registry for Patients with Erdheim-Chester Disease led by Memorial Sloan Kettering Cancer Center (MSK), in New York, NY. The next step in building the registry database includes recruiting patients with ECD to participate. The primary investigator, Eli L. Diamond, MD, will lead the research team at MSK to collect patient data in order to assist all interested stakeholders in treating patients battling this rare disease.\r\n\r\nECDGA Welcomes New ECD Care Center in North Carolina<\/a>\r\n<\/strong>The ECD Global Alliance welcomes Duke Cancer Institute in Durham, NC into the referral care center network that serves ECD patients worldwide. Richard F. Riedel, MD will be leading the institute\u2019s team at the Emerging Referral Care Center.\r\n\r\nNew York Pathologist Awarded 2017 Grant by ECD Global Alliance\r\n<\/a>The ECD Global Alliance awards an Erdheim-Chester disease research grant to MSKCC to define the disease-initiating cell population in ECD and compare genetic alterations.\r\n\r\n[accordion autoclose=false clicktoclose=true tag=h4][accordion-item title=\"2017\"]\r\n\r\nFDA Approves Zelboraf (Vemurafenib) for Erdheim-Chester Disease with BRAF V600 Mutation<\/a>\r\nFirst FDA-Approved drug for this rare disease\r\n\r\nCare Network Serves Australian Rare Disease Patients<\/a>\r\nThe Erdheim-Chester Disease Global Alliance is proud to announce the first ECD Referral Care Center to be located in Australia.\r\n\r\nThe ECD Global Alliance Welcomes Israel ECD Referral Care Center<\/a>\r\nAssuta Medical Center joins an elite group of hospitals skilled in treating Erdheim-Chester disease patients.\r\n\r\nZelboraf Being Considered for FDA Approval\r\n<\/a>FDA Grants Priority Review and Breakthrough Therapy Designation for Zelboraf (vemurafenib) in Erdheim-Chester Disease with BRAF V600 Mutation.\r\n\r\nRare Disease Care Network Grows to Help More Patients<\/a>\r\n<\/a>The Erdheim-Chester Disease Global Alliance adds four new ECD Care Centers in Canada and Europe.\r\n\r\nECD Care Center Network Expansion Possible Because of Donors<\/a>\r\n<\/a>Funding from ECD patients and their families and friends opens access to treatment facilities regardless of patient location.\r\n\r\nResidents at LSUHSC Shreveport Learn About ECD<\/a>\r\n<\/a>\u201cErdheim-Chester disease: Characteristics & Management\u201d is presented by Filip Janku, MD, PhD\r\n\r\nNIH Researchers Educate Doctors About ECD in New Orleans<\/a>\r\nErdheim-Chester Disease and the NIH Undiagnosed Disease Program were the topics of discussion at the joint LSU and Tulane University event.\r\n\r\nThe Erdheim-Chester Disease Global Alliance Raises Awareness of ECD at USCAP 2017<\/a>\r\n<\/a>Pathologists eagerly engage with ECDGA exhibitors to raise their awareness of ECD.\r\n\r\nThe ECDGA Welcomes Vanderbilt University Medical Center to the ECD Referral Care Center Network<\/a>\r\n<\/a>Nashville, TN is the newest location Erdheim-Chester Disease patients can go for treatment by ECD-knowledgeable doctors.\r\n\r\nThe ECD Global Alliance Welcomes Chinese ECD Referral Care Center\r\n<\/a>Peking Union Medical College Hospital joins an elite group of hospitals skilled in treating Erdheim-Chester disease patients.\r\n\r\n[\/accordion-item][accordion-item title=\"2016\"]\r\n\r\nDeRidder Non-Profit in Paris During ECD Awareness Week\r\n<\/a>The Erdheim-Chester Disease Global Alliance supports the rare disease by hosting events abroad.\r\n\r\nGlobal nonprofit with local roots fight rare disease<\/a>\r\nThe Erdheim-Chester Disease Global Alliance supports those affected by Erdheim-Chester Disease out of DeRidder, Louisiana\r\n\r\nErdheim-Chester Disease Declared a Histiocytic Neoplasm<\/a>\r\nThe World Health Organization reclassifies the rare disease\r\n\r\nThe Erdheim-Chester Disease Global Alliance Welcomes Lebanese ECD Care Center<\/a>\r\nThe American University of Beirut Medical Center joins the rapidly growing Erdheim-Chester Disease care system.\r\n<\/a>\r\n\r\nSt. Louis on the Map for Rare Disease Care<\/a> \r\n<\/a>Washington University in St. Louis joins the Erdheim-Chester Disease Care Center Network.\r\n<\/a>\r\n\r\nWestern Louisiana Nonprofit Grows International Care Center Network<\/a>\r\nWashington University in St. Louis and The Cancer Institute of S\u00e3o Paulo \u2013 the University of S\u00e3o Paulo in Brazil provide Erdheim-Chester Disease patients with more care opportunities.\r\n\r\nNew Care Centers for Erdheim-Chester Disease Patients Support Patient Access<\/a>\r\nThe Seattle Cancer Center Alliance and Toronto\u2019s Mount Sinai Hospital join the ECD Care Center network.\r\n\r\nCulver's of Highland Supports Rare Disease Day<\/a>\r\nLocal rare-disease patient organizes fundraiser to raise awareness of Erdheim-Chester Disease in Indiana.\r\n\r\nMayor Roberts proclaims Rare Disease Day in DeRidder<\/a>\r\nErdheim-Chester Disease is one of 7,000 rare diseases supported by the local proclamation.\r\n\r\nGovernor Bel Edwards Proclaims Rare Disease Day in Louisiana<\/a>\r\n<\/a>Erdheim-Chester Disease is one of 7,000 rare diseases supported by the Louisiana proclamation.\r\n<\/a>\r\n\r\nItalian Scientists Win Grant from Grassroots Louisiana Non-Profit<\/a>\r\n<\/a>The ECD Global Alliance awards Erdheim-Chester Disease research grant for new treatment possibilities using the RCCS\u2122 <\/em> Bioreactor.\r\n\r\nGlobal Excellence Awards Given for Rare Disease Advocacy<\/a>\r\nExceptional contributors recognized at the Third Annual International Erdheim-Chester Disease Patient & Family Gathering.\r\n\r\n[\/accordion-item][accordion-item title=\"2015\"]\r\n\r\nSmall-Town Non-Profit Grants Big Funds for Leading Research<\/a>\r\nThe Erdheim-Chester Disease Global Alliance awards two grants in 2015 for top ECD research projects from leading research institutions.\r\n\r\nInternational Erdheim-Chester Disease Conference\r\n<\/a>TMC Houston News announces the 3rd Annual Symposium in their events section.\r\n\r\nSOBI, Inc. Awards Erdheim-Chester Disease Non-Profit Grant for Care Center Creation<\/a>\r\nFirst of its kind \u2013 ECD Referral Care Centers were made possible in part by pharmaceutical funding.\r\n\r\nLouisiana Governor proclaims annual Erdheim-Chester Disease awareness week<\/a>\r\nLouisiana is the ECDGA's office location and the state has issued a Proclamation for its first-ever ECD Awareness Week.\r\n\r\n\"A Leap Forward in Rare Disease Treatment\" Erdheim-Chester disease community collaborates to change the course of a disease\r\n<\/a>A film was created to increase awareness of ECD and provide hope to those fighting this disease. A special thanks to the video participants and Trovagene, Inc. for sponsoring the film.\r\n\r\n[\/accordion-item]<\/span>\r\n[\/accordion]<\/span><\/p>","_et_gb_content_width":"","cybocfi_hide_featured_image":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-783","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/pages\/783","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/comments?post=783"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/pages\/783\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/media?parent=783"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
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