Annual Conference to be held January 21, 22 and 23, 2022
Our next conference is virtual. Save the dates. We aren’t aware of another patient education opportunity like this one for Wilson disease patients.
We believe that there will be opportunities to hear directly about progress made on the Patient Registry and updates on new drugs or clinical trials. In addition, if you haven’t been to a previous conference, we find presenters on topics for patient education such as Pregnancy and Wilson disease, diet and nutrition, Psychological, Neurological issues, the newly diagnosed, and more.
Last year our conference went smoothly and exceeded expectations. Several improvements are available. Registrants will be able to have one on one chats with each other, and there will be more time set aside for you at the help desk if you have equipment issues. We always suggest a wired connection rather than wi-fi for the best results.
We will post more information as it is available
December 4, 5, and 6, 2020
The conference is over but you can still participate
You can view the conference but the questions and answers are closed. We hope to post the responses to the unanswered questions in the near future. You are still able to visit the booths, watch videos, and pick up materials.
If you are already registered you can simply log in. If you were not registered you must use the same link to register first and then login. You will not be asked for a registration fee.
You may enter the conference for one year to revisit the presentations that you want to review. The conference schedule will remain below and you can find the topics of the presentations at the Theater link once you enter the virtual venue.
Conference Schedule in New York Time
Friday, December 4
10:30 Platform is live
11:00 introductory comments from WDA board
5 minute transition
11:20 Introduction of Eve Roberts
11:20- 11:45 Natural History of Wilson disease Eve Roberts M.D., Ph.D., FRCPC
11:45 Q & A
12:05 Pharma Presentations-Preface and Introductions Judi Keller and Michael Schilsky M.D., FAASLD
12.15 Vivet Bernard Benchou M.D., Ph.D. and Chief Medical Officer
12:30 Alexion Brian Meltzer M.D., MBA, Global Medicine leader
12:45 Deep Genomics Brendan Frey Ph.D., FRSC, Founder and CEO
12:55 Ultragenyx Emil Kakkis M.D., Ph.D. and CEO
1:10 Extreme V John Wu, President
Saturday, December 5
Platform is live at 10:30
Wilson Disease Studies
11:00 Use of PET in Wilson disease Thomas Damgaard Sandahl M.D., Ph.D.
11:25 Tetrathirmolyedate (TTM) for Wilson disease Fred Askari M.D., Ph.D.
11:45 Q & A
Wilson Disease Registry Study
12:05 Overview of Wilson Disease Registry study Michael Schilsky M.D., FAASLD
and Ayse K Coskun M.D.
12:40 Copper Studies – NCC Chris Harrington FRSC, FRCPath
1:05 Studies on iron, lipids in Wilson disease Michelle A. Camarata MBBS, SSc., MRC
1:45 Adults with Wilson disease- Neurology Amar Patel M.D.
2:10 Adults with Wilson disease-Psychiatry Paula Zimbrean M.D., FACLP, FAPA
2:35 Adults with Wilson disease-Liver Uyen Kim To M.D.
2:55 Q & A
End of Saturday
Sunday, December 6
10:30 Platform is live
11:00 Pregnancy with Wilson Peter Ott M.D.
11:25 Medication access for Wilson disease patients in the US
Specialty pharmacy Mitchell Delvechio PharmD, CSP
11:50 Adherence to medication us with Wilson disease Tamir Miloh M.D.
12:10 Q & A
12:25 10 minute Intermission
12:35 When should you seek a neurologist for Wilson disease? Jeff Bronstein M.D., Ph.D.
1:00 Newborns and young patients Pamela Valentino M.D., MSc.
1:20 Where do patients stand with Wilson Disease
Exit strategy from pandemic-treatments, vaccines, avoidance Michael Schilsky M.D., FAASLD
1:45 Q & A
What is a virtual conference?
When you arrive and sign in, you’ll be given a virtual badge. You can go to the profile tab at the top of the conference screen and add as much information about yourself as you like. Examples are a photo of yourself for friends that might not remember your name but remember what you look like. You can identify the country you are from and mention if you are a patient or a caregiver. There is also a survey tab where you can let us know about such things as what topics you would like to see covered in future webinars, and whether you would be interested in peer support groups held via Zoom.
When you go to the lounge you can find your friends and chat. In the exhibit hall you can find information about our sponsors. Some sponsors will not have a chat feature because of FDA regulatory guidelines.
WDA members can go to the WDA booth to vote for the Association Officers and Board members who have been nominated this year. You might also pick up a brochure about the WD Patient Registry. You might visit the Resources area and view patient videos.
You will have a virtual briefcase. As you enter any area and find something you’d like to save and look at later, you can save it to your briefcase and download it later.
Of course, the help desk is there to give you help if you have a problem like poor sound quality or to learn how something works.
The best way to leverage your virtual conference experience is to arrive early and check out everything so you can plan your time and see what you want to see. Remember that, once you have registered, if you are unable to see everything you want to see on the official conference dates, you can come back later and view recordings of the presentations for a year following the conference.
Limitations of technology and registration
Our conference platform providercharges us based on how many visitors we have. They require a unique email address for everyone watching. You might be tempted to share your login with a relative or a friend but, depending on whom logs in first, one of you will see it and the other will not be able to enter the conference at the same time.
To assure you can enter the conference or see recordings of it whenever you wish when it is over, please register using your own email address and refrain from sharing your login information.
Members of WDA attending the conference
I am sorting our members’ first name, last name and email addresses from our database and supplying them to the platform. Shortly before the conference, the platform will be emailing instructions and a unique code to enter the conference. Oftentimes we have a group membership but our database only has contact information for the person that bought it. If you are one of those memberships please contact me with your additional names and email address to include with the others.
For example, your spouse bought a basic plus membership but I don’t have your email address too.