dysautonomialab familial dysautonomia, FD Day 2016, team, Uncategorized

What’s new for FD Day 2016?

You either heard about FD Day or came to FD Day. Every year we tell you what is going on in the FD world. Based on your feedback, for the upcoming FD Day we have invited experts from NYU to address some of the biggest challenges that patients with FD face.

We want you to mark your calendars for FD Day 2016, on Sunday June 5th. The event is free. We will start promptly at 10 AM, with breakfast.

Something new this year will be a specialist panel with swallowing, feeding and nutrition experts, who will be available to answer all your questions. Swallow or using the g-tube in patients with FD has particular challenges. We are inviting you to submit your questions to our experts so that you can have all your questions answered.newalzheimer

In addition to hearing from Dr. Kaufmann and other members of the Dysautonomia Center Team, Dr. Howard Trachtman, renowned pediatric kidney specialist and Professor at NYU, will speak in the morning about kidney issues in FD and how best to protect the kidneys for the future. Dr. Nikolai Naryshkin from PTC will speak about their company, who are taking on the gauntlet to develop a “super drug” to treat FD and how quickly this can be ready.

 

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The past Dystingished Awardees have been honoured for the courage and determination to fight FD

We are excited to announce the outstanding, courageous adults that have been selected for the “Dystinguished” award. This year, we are introducing a new award for a Dystinguished kid, we will be delighted to reveal soon someone that has faced the challenges of FD with bravery and come out on top fighting.

We are hoping for record attendance at this year’s FD Day. We are extending the invitation to all our FD families, their friends and caregivers (nurses, therapists, and aids) to come to FD Day 2016. Registration and attendance are free. Share the news, spread the world and join us. This is the biggest source of information about FD in one place. We are offering you science presentations, panelists and expert working groups to answer all your pressing questions. We are in the fight against FD together. With your help, through research, treatment and education, we will make a difference for every family with FD.

Stay tuned for more news coming soon.

Register for the event: here