The ECD Global Alliance (ECDGA) is proud to announce the release of the complete video recordings from the 2025 Annual Patient & Family Gathering in Barcelona.
If you were unable to attend in person or would like to revisit the incredible insights shared by global experts in Erdheim-Chester Disease (ECD), now is your opportunity to watch every session from the comfort of your home.
This year’s Gathering, our 10th annual, was held at Bellvitge University Hospital and brought together patients, families, researchers, and medical professionals from around the world. With a full day of educational presentations, Q&A panels, and wellness-focused sessions, the event offered a rare and meaningful opportunity for learning, connection, and support.
Available Now on YouTube: Full Playlist of Sessions
You can now view each of the following sessions on our YouTube Channel:
Morning Sessions
- Welcome to Bellvitge & the Patient & Family Gathering
- Aperçu de l'histiocytose de l'adulte
- Biologie de l'ECD et recherche fondamentale actuelle
- Options thérapeutiques pour la déficience cognitive précoce (actuelles et à venir)
- Effets secondaires du traitement par ECD
- Manifestations cliniques de l'ECD
- Brain/Eye Involvement
- Atteintes rénales et urologiques
- Other Organ Involvement
Afternoon Sessions
- ECD et maladies associées
- Table ronde « Questions-réponses » avec des experts de l'ECD
- Santé mentale et émotionnelle des patients et des aidants
- Prise en charge de la douleur et de la fatigue
- Rester actif
- Manger sainement
- ECD Survivorship Management: Q&A Panel
- ECDGA Closing Remarks & Evaluation
Whether you’re seeking medical insights, guidance for daily life, or a more profound sense of community, these videos offer vital information and heartfelt support from those who understand ECD best.
Why These Videos Matter
The Patient and Family Gathering is more than just an event—it’s a lifeline. Every year, it reminds us that no one facing ECD is alone. By launching these videos online, we are making expert knowledge and compassionate care accessible to all, regardless of geography.
We extend our sincere gratitude to the presenters, panelists, volunteers, and our incredible ECD community for making this possible. Special thanks to Dr. Xavier Solanich and Bellvitge University Hospital for graciously hosting this year’s gathering .
Help Us Spread the Word
Share the videos with others who may benefit. Whether you are newly diagnosed, a longtime patient, a caregiver, or a healthcare provider—these resources are for you.
Watch the Full Playlist on YouTube
Together, we are making information, connection, and hope more accessible than ever.
About the ECD Global Alliance
The Erdheim-Chester Disease Global Alliance (ECDGA) is a 501(c)(3) nonprofit organization dedicated to awareness, support, education, and research related to Erdheim-Chester Disease. Since 2008, we have supported over 1,050 families in more than 75 countries.
“Everyone deserves a lifeline. No one should ever have to feel alone.”
Kathy Brewer, ECDGA Founder
L'Alliance mondiale contre la maladie d'Erdheim-Chester (ECDGA) ne fournit ni conseils médicaux, ni diagnostics, ni traitements. L'ensemble du contenu est présenté à titre purement informatif. Veuillez consulter un professionnel de santé pour toute question d'ordre médical.