10th Annual ECD Patient & Family Gathering Barcelona, Spain

Xavier Solanich, MD, PHD
Bellvitage University Hospital
Barcelona, Spain
May 26, 2025

Barcelona Patient & Family Gathering Group Picture 2025

Patient & Family Gathering Summary

The 2025 Patient & Family Gathering (PFG) brought together 57 patients and family members from 16 countries. The patient/family community was joined by 37 clinicians and scientists who are passionate about caring for patients and learning more about Erdheim-Chester Disease. Sixteen clinicians/scientists provided talks on ECD and ECD support needs. A Celebration Dinner with all attendees was enjoyed, allowing time for fellowship and recognition of community leaders who dedicate their time and resources to aid the ECD community. Please see the information below for more on the PFG activities and presentations, as well as pictures from the conference.

Presentation

PresenterPresentation SlidesPresentation Slide DeckPresentation Video (English)Presentation Video (Espanol)Presentation Video (Deutsch)Presentation Video (Francois)Presentation Video (Italiano)
Xavier Solanich, MD, PhD
Juvianee Estrada-Veras, MD		Welcome to Bellvitge & The ECD Patient and Family Gathering by the Day’s Emcee’sView SlideOther Organ Involvement in ECD - Jithma AbeykoonBeinvenido A Bellvitge - Solanich & EstradaWillkommen zum ECDGA - Xavier Solanich & Juvi Estrada-VerasBienvenue - Xavier SolanichBenvenuti all’Incontro - Xavier Solanich
Gaurav Goyal, MDOverview of Adult HistiocytosisView SlideOther Organ Involvement in ECD - Jithma AbeykoonResumen de la histiocitosis en adultos - Gaurav GoyalÜberb Histiozytose bei Erwachsenen -Gaurav Goyal2Aperçu de l’histiocytose adulte - Gaurav GoyalPanoramica dell’Istiocitosi negli Adulti - Gaurav Goyal
Oshrat Hershkovitz-Rokah, PhDBiology of ECD & Current Basic Science ResearchView SlideBiology of ECD & Basic Science Research - Oshrat RokahBiología de la ECD e Investigación Científica - Oshrat Rokah2025 - Deutsch Patient:innen- und Familientreffen - Biologie der ECD - Oshrat RokahBiologie de la maladie ECD - Oshrat RokahItaliano di Pazienti e Famiglie- Biologia della ECD e Attuali Ricerche di Base - Oshrat Rokah
Julien Haroche, MD, PhDECD Treatment Options (Current & on the horizon)View SlideECD Treatment Options: Current Approaches, Future Directions - Julien Haroche Opciones de Tratamiento ECD - Julien HarocheECD-Behandlungsoptionen - Julien HarocheOptions de traitement de l’ECD - Julien HarocheImmunohistochemistry Expression in Patients with Histiocytosis - Julien Haroche
Pol Cleries Rovira, M. PharmECD Treatment Side EffectsView SlideUnderstanding ECD Treatment Side Effects - Pol Cleries RoviraECD tratamiento Efectos secundarios - Pol Cleries2025 - Deutsch Patient:innen- und Familientreffen - Nebenwirkungen der ECD-Behandlung - Pol CleriesEffets secondaires des traitements de l’ECD - Pol CleriesEffetti Collaterali Dei Trattamenti ECD - Pol Cleries
Jerome Razanamahery, MDECD Clinical ManifestationsView SlideBrain and Eye Involvement in ECD - Eli Diamond Manifestaciones Clínicas de la ECD -Jerome RazanamaheryKlinische Manifestationen der ECD - RazanamaheryManifestations cliniques de l’ECD - Jerome Razanamahery2025 - Italiano di Pazienti e Famiglie - Manifestazioni Cliniche dell’ECD - Jerome Razanamahery
Eli Diamond, MDBrain/eye InvolvementView SlideBrain and Eye Involvement in ECD - Eli Diamond Afectación Cerebral y Ocular en la ECD - Eli Diamond2025 - Deutsch Patient:innen- und Familientreffen - Gehirn- und Augenbeteiligung bei - Eli DiamondAtteinte cérébrale et oculaire - Eli DiamondCoinvolgimento Cerebrale/Oculare - Eli Diamond
Augusto Vaglio, MD, PhDKidney/Urology InvolvementView SlideKidney and Urological Involvement in ECD - Augusto Vaglio Afectación Renal y Urológic - Augusto VaglioNieren & Urologische Beteiligung bei ECD -VaglioCoinvolgimento renale e urologico - Augusto Vaglio
Jithma Abeykoon, MDOther organ involvementView SlideOther Organ Involvement in ECD - Jithma Abeykoon Afectación de Otros Órganos - Jithma AbeykoonBeteiligung anderer Organe - Jithma AbeykoonAtteintes d’Organes - Jithma AbeykoonCoinvolgimento di Organi in ECD - Jithma Abeykoon
Francesco Pegoraro, MD, PhDECD & Concomitant DiseasesView SlideECD and Concomitant Diseases - Francesco PegoraroECD y Enfermedades Concomitantes - Francesco PegoraroECD und Begleiterkrankungen - Francesco PegoraroECD et maladies concomitantes - Francesco PegoraroECD e Malattie Concomitanti - Francesco Pegoraro
Paul Hendrie, MD, PhD
Matthew Collin, MD, PhD
Eli Diamond, MD
Julien Haroche, MD, PhD
Xavier Solanich, MD, PhD
Augusto Vaglio, MD, PhD		ECD Expert Question and Answer Paneln/aExpert Question & Answer PanelPanel de Preguntas y Respuestas con Expertos en ECDECD-Expert\:innen-FragerundePanel d’Experts ECD – Questions & RéponsesPannello di Domande e Risposte con Esperti ECD
Laia FerrerMental and Emotional Health for Patients & CaregiversView SlideMental and Emotional Health for ECD Patients and Caregivers - Laia FerrerSalud Mental y Emocional en ECD - Laia Ferrer Mentale & emotionale Gesundheit - Laia FerrerSanté mentale et émotionnelle des patients ECD - FerrerSalute Mentale ed Emotiva per Pazienti ECD - Laia Ferrer
Montserrat Olmo Plaza, MDPain & Fatigue ManagementView SlidePain and Fatigue Management in ECD - Montserrat Olmo PlazaManejo del Dolor y la Fatiga - Montserrat Olmo PlazaSchmerz- & Müdigkeitsmanagement bei ECD - Montserrat Olmo PlazaGestion de la douleur et de la fatigue - Montserrat OlmoGestione Dolore e Fatica nell’ECD - Montserrat Olmo Plaza
Mariona Violán, MDStaying ActiveView SlideStaying Active with Erdheim-Chester Disease - Mariona Violán Mantenerse Activo con la ECD - Mariona ViolanAbschließende WorteStaying Active - Mariona ViolánRester actif avec la ECD - Mariona ViolanMantenersi Attivi con la ECD - Mariona Violán
Rafael Lopez Urdiales, MDEating HealthyView SlideEating Healthy with ECD - Rafael Lopez Urdiales Alimentación Saludable - Rafael Lopez Urdiales Gesunde Ernährung bei ECD -Rafael Lopez UrdialesManger Sainement avec la ECD - Rafael Lopez UrdialesMangiare Sano con la ECD - Rafael Lopez Urdiales
Laia Ferrer
Montserrat Olmo Plaza, MD
Mariona Violán, MD
Rafael Lopez Urdiales, MD		ECD Survivorship Management: Question & Answer Paneln/aECD Survivorship Management Q&A Panel - Violán. Olmo, Lopez, FerrerPanel de Preguntas sobre Manejo de Supervivencia ECDGehirn- und Augenbeteiligung bei - Eli DiamondTable ronde Q&R : gestion de la survie ECDGestione Sopravvivenza ECD Pannello
Diane SchrinerECD Global Alliance Close and Attendee EvaluationView SlideClosing Remarks - Diane SchrinerPalabras de cierre - Diane SchrinerAbschließende Worte - Diane SchrinerClôture par - Diane SchrinerConclusioni della - Diane Schriner