Degos Conference 2007
Professor Robert Degos 1904-1987
The American College of Rheumatology (ACR) has formally approved the Degos conference as an official Study Group of the ACR and we have meeting space at the Boston Convention Center for the evening of Friday, November 9 2007 as part of the ACR annual conference.
Sandra Clancy (mother of a Degos patient) has secured the famous Ether Dome at MassGeneral Hospital for that afternoon. So the plan is to organize some specialized sessions in the afternoon at the Ether Dome dealing with the science and treatment issues for medical attendees.
A set of activities is being planned in parallel for patients and families, followed by bringing together the two groups in the mid-afternoon for a clinically-oriented discussion between patients and clinicians.
We will plan a dinner activity, and then transport the interested parties to the Convention Center for a set of three talks (with discussion to follow) geared to a large audience of rheumatologists.
ACR recognition will offer us several important advantages, among which are press coverage and wider exposure to Degos disease among a group of clinicians (rheumatologists) who will benefit from it.
We welcome any early thoughts from any of you, particularly ideas about important participants we should be recruiting and topics we need to address at the conference.
Please address your suggestions to judith@degosdisease.com along with contact details of doctors who may wish to be invited to the conference.
Patients are warmly invited to attend: this is an opportunity for mutual education! Many of our doctors have seen only very few patients, and many of us patients have seen very few doctors who know of our disease. And in addition, it is of great mutual benefit for patients to meet each other.
Some links you may find useful:
- Conference Website
- Massachusetts General Hospital
- Ether Dome photos
- Massachusetts Convention Center Authority
Travel Cost Fundraising
Judith has raised funds to enable other patients to travel to Boston (she has bought her own ticket) as they need specialised support and the doctors need to meet living patients (many diagnoses are made post mortem).
You will find more details at RealityCharity.com.
Page last modified on 5 November, 2008
