December 4, 5, and 6, 2020
Save the dates December 4, 5, and 6, 2020. We scheduled the presentations between the hours of 11:00 AM and 3:00 PM, USA Eastern Standard Time (GMT -5) so we can have the largest global live audience possible. These hours were suggested by the platform company, Arkadin, which hosted a growing number of virtual conferences in 2020. Click here to convert the event time to your time zone.
Registration is $20 per email address. Your name and email address are given to our platform provider and they will send you an admission code that is unique to you. Members of our association have free admission.
Late Registrations begin on Wednesday, December 2 and will be $28.00
There will be presentations on a range of topics that are of interest to patients and their families. You will also find videos created by various patients who share their experiences with Wilson disease. A virtual suggestion box can be found at the survey tab. We will be asking for topics for a series of webinars in 2021 and information to gauge interest in peer support groups held via Zoom. We have sponsor booths where you can collect information in a virtual briefcase to download at your convenience. Brochures describing therapies and the science behind the development of new therapies will be available. Our sponsors are working on various WD therapies and you will have a chance to see who is working on what. For the first time, we have offered our sponsors an opportunity to speak for 10 minutes to introduce their companies to you and give an overview of what they are doing. Pharmaceutical research is unrelated to the WDA Patient Registry Research and have been added to the program to enhance our understanding about Wilson disease.
Our physicians and researchers are presenting on discoveries made through our Patient Registry, patient issues, and other research. You will also have an opportunity to hear from Dr. Eve Roberts on opening day about the history of Wilson disease and from Dr. Michael Schilsky about COVID-19 and Wilson disease patients.
To aid the presenters, please submit questions in advance of the conference for them to consider. There will be an opportunity to submit questions at the conference as well. Knowing some questions in advance will help them address some of them in their presentations.
Important Information for all attendees of the conference
Whether you are a member or someone that registered you will receive your login instructions by email on Wednesday or Thursday, December 1 or 2nd. Not only will you find how to find the conference and login, but you will see a link to frequently asked questions and another link to an equipment test that is very easy. You only have to click it.
Note to members of Wilson disease association. I am transferring a first and last name with associated email address to the platform. Conferences are free for members as a membership benefit. All members with an email address are automatically registered whether you choose to attend or not. You will receive the email referenced above.
On December 1, we will be switching to the platform’s payment system using PayPal. The price will increase to $28.00 dollars. This is necessary to handle last minute registrations. We encourage you to register early. We have limited staff and will not have the manpower or time to handle difficulties during that transition.
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.