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11th Annual ECD Patient & Family Gathering – Birmingham 2026
Erdheim-Chester Disease Global Alliance Announces 2026 Patient & Family Gathering.
Birmingham, AL — The Erdheim-Chester Disease Global Alliance (ECDGA) and UAB School of Medicine invites patients, families, healthcare professionals, and researchers to save the date.
- Patient & Family Gathering (PFG): April 29–30, 2026
Wednesday, April 29, 2026
Meet and Greet: 3:00 pm-5:00 pm
Location: Hilton at UAB Downtown
Thursday, April 30, 2026
Patient & Family Gathering: 8:00 am-4:30 pm
Location: Marnix E. Heersink Conference Center at the University of Alabama at Birmingham
Celebration Dinner: 6:00 pm-8:00 pm
Location: Hilton at UAB Downtown
This 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.
Further details on the hotel and program highlights will be released in the coming months.
Agenda
| Time | Allocated minutes (510 min total) | Presentation Subject Possibilities (Actual Titles to be Provided by Presenters) | Presenter | Session Description |
|---|---|---|---|---|
| 8:00 AM | 30 | Registration & Light Breakfast | ||
| 8:30 AM | 15 | Welcome to Birmingham & PFG Meeting | Gaurav Goyal, MD | Welcome to the 11th Annual Erdheim-Chester Disease International Conference! Introductions to Birmingham, UAB and the ECD Global Alliance. |
| 8:45 AM | 15 | Manifestations of histiocytosis in adults | Matthew Collin, MD, PhD | Learn 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. |
| 9:00 AM | 15 | Histiocytosis at the Cellular Level | Astrid van Halteren, PhD | This presentation will zoom into the different cell types which can be found in the bone marrow, blood and tissues of patients diagnosed with histiocytosis |
| 9:15 AM | 15 | ECD/Histio Treatment Options | Sam Reynolds, MD | ECD/Histio Treatment Options (Current & on the horizon) |
| 9:30 AM | 15 | Tagreted Therapy: The Good, the Bad, and the Unaffordable | Daniel Sokolowski, PharmD | Overview of targeted treatments for histiocytosis and management of their adverse effects. |
| 9:45 AM | 20 | Break | N/A | |
| 10:05 AM | 15 | Advancing treatment for histiocytic neurodegeneration through patient specific modeling | Nicole Coufal, MD, PhD | The importance of patient samples to the science, and the importance of pilot funding and where we hope to take it in the future. |
| 10:20 AM | 15 | What should I know about ECD Treatment and My Heart? Potential cardiac side effects of ECD treatment. | Carrie Lenneman, MD, MSCI | Discuss common medication used in treatment of ECD . Review potential cardiac side effects and management strategies of ECD treatment. |
| 10:35 AM | 15 | ECD on the Brain | Eli Diamond, MD | Discussion of ECD effects on the brain. |
| 10:50 AM | 15 | Endocrine Manifestations of Erdheim-Chester Disease | Alexandra Dodd, MD | Understand endocrine manifestations of ECD including effects on the pituitary gland. Understand the treatments for endocrine disorders related to ECD. |
| 11:05 AM | 40 | Expert Q&A | Julien Haroche, MD, PhD Eli Diamond, MD Ronald Go, MD Gaurav 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. |
| 11:45 AM | 15 | Pictures | N/A | |
| 12:00 – 1:00pm | 60 | Lunch | N/A | |
| 1:00 PM | 20 | Research Opportunities (Panel Discussion - 5 min each) | Eli Diamond, MD (Registry) Gaurav Goyal, MD (Survivorship) Jithma Abeykoon, MD (CSF1R, ERK) Matthew Collins, MD, PhD | Hear the answers from ECD Medical experts about the open research opportunities. Hear up-to-date answers from those who are doing ECD research. |
| 1:20 PM | 20 | Expert Question & Answer Panel | Gaurav Goyal, MD Eli Diamond, MD Jithme Abeykoon, MD Matthew Collins, MD, PhD | Ask 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.] |
| 1:40 PM | 60 | Breakout Sessions | Kevin O'Brien, RN, MS-CRNP (patients) Sylvia Huang, PhD, MA, MEd, FAAHPM (Caregivers) | Breakout Session: - Patients: Personal Challenges in Living with Erdheim-Chester Disease - Cargivers & Family: Addressing YOUR Emotional Needs |
| 2:40 PM | 20 | Break | N/A | |
| 3:00 PM | 15 | General medical management for ECD | Kevin O'Brien, RN, MS-CRNP | Highlighting 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. |
| 3:15 PM | 15 | Emotional and Cognitive Changes in ECD | Sylvia Huang, PhD, MA, MEd, FAAHPM | Living 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. |
| 3:30 PM | 15 | Fatigue and Pain in Erdheim-Chester Disease: Root Causes and Practical Strategies for Energy, Relief, and Resilience | Richard Taylor, PhD, DNP, CRNP, APN-BC | This session is designed to empower patients and caregivers by unpacking the root causes of fatigue and pain in Erdheim-Chester Disease (ECD). The goal is to offer meaningful, evidence-informed tools to reduce suffering, build resilience, and improve energy, mobility, and quality of life. |
| 3:45 PM | 15 | Movement is Medicine | Elizabeth Bohorfoush, DPT | Patients and caregivers receive guidance through gentle, low-level exercises to help reduce pain, build strength, improve posture, and encourage activity. |
| 4:00 PM | 20 | Expert Question & Answer Panel | Kevin O'Brien, RN, MS-CRNP Sylvia Huang, PhD, MA, MEd, FAAHPM Richard Taylor, PhD, DNP, CRNP, APN-BC Elizabeth Bohorfoush, DPT | Ask 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.] |
| 4:20 PM | 10 | ECDGA Close | Jerome 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. |
| 510 |
NOTE: Register before February 1st to take advantage of the early bird registration cost! Save $100 USD and register for only $100 USD!
Mark Heaney Awareness Award & Community Champion Award
February 1st, 2026 – Last day to submit your nomination for the Mark Heaney Awareness Award & Community Champion Award.
- Please submit your nominations here.
- Mark 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.
- Community 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.
Contact:
Erdheim-Chester Disease Global Alliance
Email: [email protected]
Patient Poster – Submissions
February 1, 2026, is the last day to complete a Patient Poster for display at the Patient & Family Gathering. Please submit your poster information here!
Travel Scholarships
Travel Assistance – The Glenn Padnick Memorial Travel Fund Now accepting applications for the 2026 ECDGA Conference.
Glenn 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.
In 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.
Applications 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.
Application Deadline: February 1, 2026 Award Notifications: No later than March 1, 2026
Apply Here: Glenn Padnick Memorial Travel Fund Request.
Conference Hotel & Travel Information
Conference Hotel
Hilton Birmingham at UAB
808 20th Street South
Birmingham, AL 35205
Phone: +1 (659) 251-1934
A block of rooms has been reserved at the Hilton Birmingham at UAB for conference attendees.
Rooms must be reserved by April 6, 2026, to receive the group rate.
If 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.
Airport Transportation
Birmingham–Shuttlesworth International Airport (BHM)
Complimentary shuttle service is available from the Birmingham airport to the hotel and is provided directly by the Hilton Downtown at UAB.
To use the shuttle:
- Collect your luggage.
- Call the hotel at 205-933-9000 to request the shuttle.
- Proceed to Door #4L and wait for the bus marked “Hilton.”
Traveling via Atlanta
Hartsfield–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.
Our Sponsors
This 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.
