2020 Rare Disease Virtual Patient Symposium
November 12 @ 10:00 am - December 12 @ 4:30 pm
About this Event
Our 5th Patient Symposium will take place on Saturday, December 12th from 10am – 4pm EST, followed by our Gala for a Cure from 7pm – 9pm EST.
Connect with other MPSI, MPS II, MPS IVA, MPSVI, LAL-D, and CLN2 families and patients from across the country. Through a combination of online presentations, panel discussions, and breakout sessions, virtually hear from medical professionals specializing in these rare disorders. We’ll talk advocacy, COVID-19, clinical trials, the latest research, our ever popular “Ask The Docs” session, and have breakout groups with disease specific discussions. And we’ll just catch up and reconnect too!
Dr. Nicola Brunetti (Italy, Gene Therapy), Dr. John Mitchell, Dr. Paul Harmatz, Dr. Emily De Los Reyes, Dr. Brian Biggar, and Dr. Ellen Buck-McFadyen have already signed on to join us for this event and to be on hand to present their latest research and to answer your pressing questions.
For immediate households of a rare disease family, there will be a virtual children’s program, and we will be shipping you dinner ahead of time. Households will also be eligible for child care reimbursement if required (please email us for more information – contact info is below).
Virtual spaces are high in demand, so please register as soon as possible! The registration deadline is November 10th, 2020.
We look forward to seeing you (virtually) on December 12th! We hope you’ll also join us after the Symposium for our 10th annual Gala for a Cure. This festive event will include musical acts, stories, awards, and more, and is open to anyone who would like to watch.
For more information, please connect directly with Andrew McFadyen (firstname.lastname@example.org) or Alexandra Hall (email@example.com). We look forward to welcoming you all!