Family feedback from WORLDSymposium 2021!

Dear Dr. Whitley and WORLDSymposium team,

I wanted to share some lovely feedback with you all regarding the ability for families to attend the meeting virtually this year free of charge … though we’d all prefer to be together in person, this is such a great opportunity to learn how we can increase access for patients and families to the amazing science routinely shared at the WORLDSymposium. Thanks for all you do!”
(Cara O’Neill, Chief Science Officer Cure Sanfilippo Foundation)

What Patient/Families have to say:

  • This is great and actually really helpful for international families to be able to listen in vs the normal cost of having to fly to the US. Hope they keep a virtual attendee option in future for patients and families at least.
  • Amazing opportunity for international patients/families.
  • … it’s not just the cost but also the practicality of leaving a child/ children behind (including those with challenges such as Sanfilippo to attend – we needed to be away for 5 days at least from the UK to be able to see the core conference material).  It wasn’t something I would choose to do ideally…We felt it was an essential thing to do as a newly diagnosed family considering trial options to get access to the latest information and ask questions directly to experts in poster sessions. It was invaluable for us.
  • We are in Australia. I have 2 children with attenuated Sanfilippo type A (as well as a newborn). Attending would be a near impossibility for our family. Both the cost and difficulty travelling that far (13 hours just to get to LAX). 
  • I am very grateful indeed for the free registration for family members! We live in Spain and it would have been almost impossible for us to attend the congress otherwise.”

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