BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Erdheim-Chester Disease Global Alliance - ECPv6.16.3//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-WR-CALNAME:Erdheim-Chester Disease Global Alliance
X-ORIGINAL-URL:https://www.erdheim-chester.org
X-WR-CALDESC:Events for Erdheim-Chester Disease Global Alliance
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:America/Chicago
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20250309T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20251102T070000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20260308T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20261101T070000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20270314T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20271107T070000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260429
DTEND;VALUE=DATE:20260501
DTSTAMP:20260604T020551
CREATED:20251030T142537Z
LAST-MODIFIED:20260410T171905Z
UID:10000955-1777420800-1777593599@www.erdheim-chester.org
SUMMARY:11th Annual ECD Patient & Family Gathering - Birmingham 2026
DESCRIPTION:Erdheim-Chester Disease Global Alliance Announces 2026 Patient & Family Gathering. \nBirmingham\, AL — The Erdheim-Chester Disease Global Alliance (ECDGA) and UAB School of Medicine invites patients\, families\, healthcare professionals\, and researchers to save the date. \n\nPatient & Family Gathering (PFG): April 29–30\, 2026\n\nWednesday\, April 29\, 2026\nMeet and Greet: 3:00 pm-5:00 pm\nLocation: Hilton at UAB Downtown \nThursday\, April 30\, 2026\nPatient & Family Gathering: 8:00 am-4:30 pm\nLocation: Marnix E. Heersink Conference Center at the University of Alabama at Birmingham \nCelebration Dinner: 6:00 pm-8:00 pm\nLocation: Hilton at UAB Downtown \nThis event will bring together the global Erdheim-Chester disease community with leading medical experts to share the latest research\, clinical insights\, and community resources. Attendees can expect educational sessions\, opportunities to connect with peers\, and updates on emerging treatments and patient care. \nFurther details on the hotel and program highlights will be released in the coming months. \nAgenda\n\n\n\n\n	TimeAllocated minutes (510 min total)Presentation Subject Possibilities (Actual Titles to be Provided by Presenters)PresenterSession Description\n\n\n\n\n	8:00 AM30Registration & Light Breakfast\n\n\n	8:30 AM15Welcome to Birmingham & PFG MeetingGaurav Goyal\, MDWelcome to the 11th Annual Erdheim-Chester Disease International Conference!  Introductions to Birmingham\, UAB and the ECD Global Alliance.\n\n\n	8:45 AM15Manifestations of histiocytosis in adultsMatthew Collin\, MD\, PhDLearn about the difference types of adult histiocytic disorders. How are they different? How are they the same?  What have we learned recently that makes us believe they are more alike than they once were.\n\n\n	9:00 AM15Histiocytosis at the Cellular LevelAstrid van Halteren\, PhDThis presentation will zoom into the different cell types which can be found in the bone marrow\, blood and tissues of patients diagnosed with histiocytosis\n\n\n	9:15 AM15ECD/Histio Treatment OptionsSam Reynolds\, MDECD/Histio Treatment Options (Current & on the horizon)\n\n\n	9:30 AM15Tagreted Therapy: The Good\, the Bad\, and the UnaffordableDaniel Sokolowski\, PharmDOverview of targeted treatments for histiocytosis and management of their adverse effects.\n\n\n	9:45 AM20BreakN/A\n\n\n	10:05 AM15Advancing treatment for histiocytic neurodegeneration through patient specific modelingNicole Coufal\, MD\, PhDThe importance of patient samples to the science\, and the importance of pilot funding and where we hope to take it in the future.\n\n\n	10:20 AM15What should I know about ECD Treatment and My Heart?  Potential cardiac side effects of ECD treatment.Carrie Lenneman\, MD\, MSCIDiscuss common medication used in treatment of ECD . Review  potential cardiac side effects and management strategies of ECD treatment.\n\n\n	10:35 AM15ECD on the BrainEli Diamond\, MDDiscussion of ECD effects on the brain.\n\n\n	10:50 AM15Endocrine Manifestations of Erdheim-Chester DiseaseAlexandra Dodd\, MDUnderstand endocrine manifestations of ECD including effects on the pituitary gland. Understand the treatments for endocrine disorders related to ECD.\n\n\n	11:05 AM40Expert Q&AJulien Haroche\, MD\, PhD\nEli Diamond\, MD\nRonald Go\, MD\nGaurav Goyal\, MD (Moderator)Ask your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research.\n\n\n	11:45 AM15PicturesN/A\n\n\n	12:00 – 1:00pm60LunchN/A\n\n\n	1:00 PM20Research Opportunities (Panel Discussion - 5 min each)Eli Diamond\, MD (Registry)\nGaurav Goyal\, MD (Survivorship)\nJithma Abeykoon\, MD (CSF1R\, ERK)\nMatthew Collins\, MD\, PhDHear the answers from ECD Medical experts about the open research opportunities.  Hear up-to-date answers from those who are doing ECD research.\n\n\n	1:20 PM20Expert Question & Answer PanelGaurav Goyal\, MD\nEli Diamond\, MD\nJithme Abeykoon\, MD\nMatthew Collins\, MD\, PhDAsk your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research.  Don’t be shy\, ask your questions about ECD in general! [Please note\, the panel is unable to provide any personal medical advise during this session.]\n\n\n	1:40 PM60Breakout SessionsKevin O'Brien\, RN\, MS-CRNP (patients) \n\nSylvia Huang\, PhD\, MA\, MEd\, FAAHPM (Caregivers)Breakout Session:\n\n- Patients: Personal Challenges in Living with Erdheim-Chester Disease\n\n- Cargivers & Family:  Addressing YOUR Emotional Needs\n\n\n	2:40 PM20BreakN/A\n\n\n	3:00 PM15General medical management for ECDKevin O'Brien\, RN\, MS-CRNPHighlighting the importance of managing ongoing general medical problems.  For example\, hypertension\, diabetes\, weight\, cholesterol levels\, etc.  These uncontrolled medical problems can compound overall disease burden.\n\n\n	3:15 PM15Emotional and Cognitive Changes in ECDSylvia Huang\, PhD\, MA\, MEd\, FAAHPMLiving with Erdheim-Chester Disease can bring emotional\, cognitive\, and fatigue-related changes that are real and often invisible. This session offers understanding\, reassurance\, and practical guidance to help patients and families make sense of these experiences. Participants will learn about supportive strategies and resources that promote resilience\, wellbeing\, and hope.\n\n\n	3:30 PM15Fatigue and Pain in Erdheim-Chester Disease: Root Causes and Practical Strategies for Energy\, Relief\, and ResilienceRichard Taylor\, PhD\, DNP\, CRNP\, APN-BCThis session is designed to empower patients and caregivers by unpacking the root causes of fatigue and pain in Erdheim-Chester Disease (ECD).\n\nThe goal is to offer meaningful\, evidence-informed tools to reduce suffering\, build resilience\, and improve energy\, mobility\, and quality of life.\n\n\n	3:45 PM15Movement is MedicineElizabeth Bohorfoush\, DPTPatients and caregivers receive guidance through gentle\, low-level exercises to help reduce pain\, build strength\, improve posture\, and encourage activity.\n\n\n	4:00 PM20Expert Question & Answer PanelKevin O'Brien\, RN\, MS-CRNP\nSylvia Huang\, PhD\, MA\, MEd\, FAAHPM\nRichard Taylor\, PhD\, DNP\, CRNP\, APN-BC\nElizabeth Bohorfoush\, DPTAsk your questions and hear the answers from the experts. Don’t be shy\, ask your questions! [Please note\, the panel is unable to provide any personal medical advise during this session.]\n\n\n	4:20 PM10ECDGA CloseJerome Henson\, ED (ECDGA)Learn more about the ECD Global Alliance.  Hear why the organization was created and what has been accomplished as a result.  Learn how the organization is able to do its work and how you can become more involved in improving the lives of all who have been impacted by Erdheim-Chester Disease.\n\n\n	510\n\n\n\n\nDownload Agenda \nRegister \nNOTE: Register before February 1st to take advantage of the early bird registration cost! Save $100 USD and register for only $100 USD! \nMark Heaney Awareness Award & Community Champion Award\nFebruary 1st\, 2026 – Last day to submit your nomination for the Mark Heaney Awareness Award & Community Champion Award. \n\nPlease submit your nominations here.\n\nMark Heaney Awareness Award.  Nominate a medical professional who is working to improve the lives of ECD patients by bringing awareness to the disease within the medical profession.\nCommunity Champion Award.  Nominate anyone (patient\, caregiver\, medical professional\, friend\, etc.) who has volunteered their time to help improve the lives of all of those impacted by ECD.\n\n\n\nContact:\nErdheim-Chester Disease Global Alliance\nEmail: support@erdheim-chester.org \nPatient Poster – Submissions\nFebruary 1\, 2026\, is the last day to complete a Patient Poster for display at the Patient & Family Gathering. Please submit your poster information here! \nTravel Scholarships\nTravel Assistance – The Glenn Padnick Memorial Travel Fund Now accepting applications for the 2026 ECDGA Conference. \nGlenn Padnick lived a full and impactful life while navigating Erdheim-Chester Disease (ECD) for decades. From 2011 to 2022\, he served with unwavering dedication on the ECD Global Alliance Board of Directors\, always ensuring that the voices and needs of patients remained central to every decision. \nIn honor of Glenn’s legacy of service and compassion\, his family generously established the Glenn Padnick Memorial Travel Fund. This fund provides financial assistance to help patients\, caregivers\, and medical professionals attend the annual ECD conference for those who may not otherwise be able to participate due to financial constraints. \nApplications are now open for travel assistance for the 2026 ECD Conference. Funding is limited\, and priority will be given to individuals who have never attended the event before. Our goal is to make this opportunity available to as many community members as possible with the resources available. \nApplication Deadline: February 1\, 2026 Award Notifications: No later than March 1\, 2026 \nApply Here: Glenn Padnick Memorial Travel Fund Request. \nConference Hotel & Travel Information\nConference Hotel\nHilton Birmingham at UAB\n808 20th Street South\nBirmingham\, AL 35205\nPhone: +1 (659) 251-1934 \nA block of rooms has been reserved at the Hilton Birmingham at UAB for conference attendees.\nRooms must be reserved by April 6\, 2026\, to receive the group rate. \nBook a Room \nIf you have any issues with booking your room\, please contact  Simon Hill at the Hilton Birmingham Downtown.  His number is 205-910-1970 and his email is simon.hill@hiltoncom. \nAirport Transportation\nBirmingham–Shuttlesworth International Airport (BHM)\nComplimentary shuttle service is available from the Birmingham airport to the hotel and is provided directly by the Hilton Downtown at UAB. \nTo use the shuttle:  \n\nCollect your luggage.\nCall the hotel at 205-933-9000 to request the shuttle.\nProceed to Door #4L and wait for the bus marked “Hilton.”\n\nTraveling via Atlanta\nHartsfield–Jackson Atlanta International Airport (ATL) is approximately 3 hours from Birmingham and offers direct international flights to most countries. Shuttle services are available between the Atlanta airport and Birmingham for travelers arriving through ATL. \nShuttle Service Link \nRegister \nOur Sponsors\nThis meeting is made possible by our sponsor\, Father Charles Balnaves of Melbourne\, Australia\, who supports this event in memory of his late wife\, Tanya. We are grateful for Father Charles’ continued\, generous sponsorship. We also appreciate the support of ARUP Laboratories.\n 
URL:https://www.erdheim-chester.org/event/11th-annual-ecd-patient-family-gathering-birmingham-2026/
LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, AL\, 35205\, United States
CATEGORIES:ECD Patient & Family Gathering,Featured
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/09/Patient-Family-Gathering-hd-v2.png
END:VEVENT
END:VCALENDAR