4. internasjonale ECD-samling for pasienter og pårørende Paris, Frankrike

Sted: Paris, Frankrike Paris, Frankrike

I alt 63 pasienter og pårørende, samt en rekke leger, fra 17 forskjellige land deltok på pasient- og pårørendesamlingen 2016. Deltakerne fikk informasjon om aktuelle studier og forsøk på ECD, hvordan ECD kan påvirke ulike organer i kroppen, smertebehandling, skanninger og pleiehåndtering. Se arrangementsmaterialet nedenfor for mer informasjon om dette vellykkede arrangementet.

Materialer til 2016-arrangementet

Presentasjoner

Følgende presentasjoner ble inkludert i programmet for 2016 Patient & Family Gathering i Paris, Frankrike. Besøk ECD Global Alliance YouTube-kanal for alle publiserte ECD -relaterte videoer.

Presenter	Presentation Slides	Presentation Video
Stéphane Barete, MD	ECD Skin Issues	ECD Skin Issues
Giulio Cavalli, MD	ECD Lung & Heart Issues	ECD Lung & Heart Issues
Carine Courtillot, MD	Endocrinological Consequences of ECD	Endocrinological Consequences of ECD
Eli Diamond, MD (Presented by Juvianee Estrada-Veras, MD)	ECD Neurological Issues	ECD Neurological Issues
Benjamin Durham, MD	ECD Studies at MSKCC	See ECD Studies & Trials Panel
Philippe A. Grenier, MD	CT of Thoracoabdominal Involvement in Erdheim-Chester Disease	See ECD Scan and Radiology Panel.
Filip Janku, MD, PhD	Importance of Clinical Trials	See ECD Studies & Trials Panel
Kenneth L. McClain, MD, PhD	ECD Studies & Trials – Texas Children’s Cancer Center	See ECD Studies & Trials Panel
Augusto Vaglio, MD, PhD	Renal & Ureteral Involvement in ECD	Renal & Ureteral Involvement in ECD
Panel participants:Achille Aouba, MD, PhD, Lorenzo Dagna, MD, Juvianee Estrada-Veras, MD, Julien Haroche, MD, PhD, Filip Janku, MD, PhD, Kenneth McClain, MD PhD, Augusto Vaglio, MD, PhD	ECD Studies & Trials Panel	ECD Studies & Trials Panel
Panel participants:Marcus Chen, MD, Phillippe Cluzel, MD PhD, Phillippe Grenier, MD, Phillippe Maksund, MD	ECD Scan and Radiology Panel	ECD Scan and Radiology Panel
Physician panelists answer patient questions regarding Erdheim-Chester Disease.	Doctor Question & Answer Panel	Doctor Question & Answer Panel

Bilder

Materiell til arrangementer i 2015

Presentasjoner

Se følgende presentasjoner fra 2015 Patient Gathering i Houston, Texas.

Presenter	Presentation(s)	Videos
Timothy Craig Allen, MD, JD	Social Media in the Rare Disease World	Not available.
Naifa Lamki Busaidy, MD	ECD & Hormones	Not available.
Jean Campbell	Power of Patient Groups	The Power of Patient Groups
Susan Y. Chon, MD	Not available.	ECD and Skin
Maxine Grace de la Cruz, MD	ECD & Pain Management	ECD and Pain Management
Eli L. Diamond, MD	Braf Negative; ECD & Brain	Not available.
Nancy K. Feeley, RN, MS, CRNP	ECD & Exercise	ECD and Exercise
Horiana Grosu, MD	ECD & Lungs	ECD and the Lungs
Saamir Hassan, MD	ECD & Heart	ECD and the Heart
Filip Janku, MD, PhD	Importance of Clinical Trials	The Importance of Clinical Trials
Cynthia Kizer, RN, BSN	Insurance Appeals	ECD and Insurance Approval Issues
Chaplain Richard T. Maddox, BCC	Facing Key Spiritual Care Issues	Facing Key Spiritual Issues
Kenneth L. McClain, MD, PhD	ECD101	ECD 101
Omar Ozgur, MD	ECD & Eyes	ECD and Eyes
Susan Robertson, PhD, OTR/L, FAOTA	Financial Stability & SSI	ECD and Social Security Applications
Robert Zieve, MD	Integrative Medicine	Not available.

Bilder