Felles forskning på utstilling! Left to right: Diane Schriner (ECDGA), Elise Fitzerald (UAB Medical Student & ECDGA Volunteer), Jerome Henson (ECDGA) discussing the poster, “Filling an Unmet Need: A Review of the ECDGA Registry”. The ECDGA contact registry helps drive data-informed progress in ECD research and care.
Denne uken representerer ECDGA-president Diane Schriner, styremedlem Paul Hendrie, MD, og teammedlem Jerome Henson med stolthet Den globale alliansen for Erdheim-Chester-syndromet ved Histiocyte Society sitt 41. årsmøte!
Dette internasjonale møtet samler leger og forskere som arbeider for å fremme forståelsen av og behandlingen av histiocytiske sykdommer – blant annet Erdheim-Chester-syndromet (ECD), Langerhans-cellehistiocytose (LCH), Rosai-Dorfman-Destombes-syndromet (RDD), og Hemofagocytisk lymfohistiocytose (HLH).
ECDGA-teamet har fokus på:
- Å fremme interessen for forskning innen tidlig barndomsutvikling
- Styrking av det globale samarbeidet med andre interesseorganisasjoner
- Å arbeide for etablering av nye barnehager over hele verden
Det er inspirerende å se at interessen for ECD øker takket være alt arbeidet og støtten fra ECD-fellesskapet.
Collaborative Conversations in Action! Left to right: Jerome Henson (ECDGA), Fernando Gotz (OR Association), Diane Schriner (ECDGA), Claudio Di Girolama(HA – Canada), discussing the poster, “Global Histio: The international Patient Advocacy Group Coalition for Collaboration in Histiocytosis.” This project highlights the power of international advocacy collaboration- of which ECDGA is a proud participant.
ECD Research Being Shared! Left to right: Jerome Henson (ECDGA), Laura Eurelings, MD (Erasmus MC University Medical Center), Diane Schriner (ECDGA), discussing the poster, “Anti-IL-6 Therapy in Erdheim-Chester Disease.” Conversations like these help drive forward the scientific understanding of ECD.
Raising Awareness of ECDGA Programs! Diane Schriner at the ECDGA informational table, sharing details about the ECDGA’s support programs—including our growing network of ECD Referral Care Centers around the world.
International Collaboration in Action! Left to eight: Jerome Henson (ECDGA), Diane Schriner (ECDGA), Francesco Pegoraro, MD (Meyer Children’s University Hospital, Italy). Cross-border partnerships are essential in advancing the understanding of Erdheim-Chester Disease.
Insight from the ECDGA Medical Advisory Board! Left to right: Diane Schriner (ECDGA), Dr. Ronald Go (Mayo Clinic, Rochester), and Jerome Henson (ECDGA) discuss care strategies and research priorities. Dr. Go is a valued member of the ECDGA Medical Advisory Board.