ONE GOAL. ONE GROUP. ONE VOICE.

 

6TH EUROPEAN TAY-SACHS & SANDHOFF FAMILY CONFERENCE

18th – 20th May 2018

Madrid, Spain

The European Tay-Sachs and Sandhoff Family Conference is the one event that brings together families affected by the diseases. During the weekend there is plenty of opportunity to meet other people and the research teams.

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Add to My Calendar 2018-05-018 09:30:00 2018-05-20 17:00:00 Europe/London 6th European Tay-Sachs & Sandhoff Family Conference The 6th European Tay-Sachs & Sandhoff Family Conference in Madrid. Madrid, Spain European Tay-Sachs & Sandhoff Charity Consortium info@cats-foundation.org

THE SCHEDULE

Arrival / registration

09:30 AM

Introduction to the conference

by Daniel Lewi

10:00 AM

Receiving a diagnosis of Tay-Sachs or Sandhoff diseases: a challenging time for the family

by Dra. Carolina del Rincón

10:15 AM

Taking care of the carers

by Dra. Marialy Guedez

11:00 AM

Coffee Break

11:30 AM

What is happening to my sibling?

by TBC

12:00 PM

Family Experiences

by Patricia Durao Lewi, Beatriz Fernandez, Benoit Clermont

12:30 PM

Family planning methods

by Dr. García Velasco

13:00 PM

Summary and Questions

by Dra Marialy Guedez

13:30 PM

Lunch

02:00 PM

From diagnosis until the end: how to cope with a child with a life limiting condition

by TBC

03:30 PM

First day closure and coordination for the bus tour

by Natalia Suárez

04:30 PM

Arrival

09:45 AM

Gene therapy research update

by Dra Begoña Cachón

10:00 AM

The timeline of establishing a clinical trial

by Prof. Tim Cox

10:45 AM

Coffee Break

11:30 AM

Research for an orphan drug at the University of Seville

by Dr Mario Cordero

12:00 AM

The potential benefit of Tanganil

by Dra Tatiana Bremova

12:45 PM

Morning summary and questions

by TBC

13:30 PM

Lunch

02:00 PM

Gene Therapy of Sandhoff using an AAV9 vector

by Dra Catherine Caillaud

04:00 PM

The charities role in a clinical trial

by Daniel Lewi & Beatriz Fernández

04.45 PM

Close of the conference

by Beatriz Fernández

05:30 PM

WHAT TO EXPECT

Two great days

The conference will feature some fantastic speakers who will make the event a huge success.

Location

Madrid, the sunny capital of Spain, is one of the most cosmopolitan and welcoming cities in the country, guests will be able to enjoy this great city during their stay.

Free food and drink!

All food and drink will be provided – including a welcome dinner the night before the conference.

Accommodation

The Barceló Torre de Madrid Hotel is part of one of the most iconic buildings of the capital and located in Place de España, right in the centre and close to all amenities.

JOIN THE CONVERSATION

Follow the conference at #etscc2018!

The hotel

All attendees will be able to book a room at the Barceló Torre Madrid in Madrid. This is also the venue of the conference.

Rooms

Single, Double, Triple and Family Rooms available.

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Hotel

Barceló Torre Madrid Hotel

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Conference room

Meeting facility at Barceló Torre Madrid Hotel

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PRICING

To attend all you have to pay for is your accommodation – everything else is covered.

Hotel rooms
  • Single Room: €155 per night
  • Double Room: €169 per night
  • Triple Room: €220 per night
  • Family Room: €270 (two adults + three children)

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Food & drink
£zero
  • Breakfast included
  • Buffet lunch included
  • Welcome dinner included
  • Networking dinner included

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Materials
£zero
  • Conference brochure included
  • Gift for families included
  • Instamemory participation
  • Presentations circulated post event

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Frequently Asked Questions
How can I get to the venue?

The conference venue can be accessed by rail, air or by road. Use the contact form to be sent more details

What about accommodation?

The hotel accommodation is at the same place as the conference itself.

How do I book?

To book your accommodation please contact us so we can give you the reference code when speaking with the Barceló Torre Madrid Hotel.

Are the places limited?

Yes, we have limited numbers at the conference room and the events tend to get full very quickly, we advise to book as soon as you can.

OUR SPONSORS

The 6th European Tay-Sachs & Sandhoff Disease Family Conference is proudly supported by the following companies.

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VENUE ADDRESS

Barceló Torre Madrid Hotel

Plaza de España, 18

28008 Madrid

Spain

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If you have any questions about the event, please contact us directly. We will respond for sure.

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