miércoles, 27 de abril de 2016

Myotubular myopathy research events

Myotubular myopathy research events

Thank you to all of our supporters for your kind generosity in 2009


Join The Patient Registry
European Family Conference 2016


Friday, May 6, 6 pm: informal get-together

Saturday, May 7, 9 am – 6 pm: Scientific presentations and workshop programme
Download Scientific Presentation Agenda here

  • Dr Ana Buj Bello, Genethon, Paris
  • Dr Johann Bohm, IGBMC, Strasborg
  • Dr Casey Childers, University of Washington
  • Dr Belinda Cowling, IGBMC, Strasborg
  • Dr Jim Dowling (by video), Sick Kids, Toronto
  • Dr Volker Haucke, Leibniz Institut für Molekulare Pharmakologie
  • Dr Heinz Jungbluth, King's College, London
  • Dr Katherina Ketel, Leibniz Institut für Molekulare Pharmakologie
  • Dr Mike Lawlor, University of Michigan
  • Professor Francesco Muntoni, University College, London
  • Dr Markus Reno, University of Florida
  • Dr Wolfgang Müller-Felber, Ludwig-Maximilian -University of Munich

Workshops include updates on the European Natural History Study; RYR1 in adults; pre-implantation genetic diagnosis; update from Audentes Therapeutics on gene therapy clinical trials for MTM1; outcome measures for trials in MTM1; Galileo vibration plates for muscle training; and Myotubular and Centronuclear Myopathy Patient Registry.

Further information about the workshops here

Sunday, May 8, 9 am – 12 noon: continuation of workshops and closing

Venue and room rates:

Micador Ramada Hotel, Zum Grauen Stein 1, D-65527 Niedernhausen
Room costs per night - including breakfast - 57/67/97 Euros (single, double, triple)

Reservations are possible now by phone +49(0) 6127 901 615, and email: tina.zimmermann@h-hotels.com, For access to the special rates, please quote “MTM-meeting”.

You can also book online using this special link which will automatically give you the special Family Conference attendee rate.

Offer expires on March 30th, rooms can be cancelled up to 7 days before arrival.

How to get there

By train: The nearest ICE (fast train) stop is Frankfurt Main Station. From there it is about 30 mins with regional trains to Niedernhausen. The hotel is 2 km from the station and the taxi fare is 8 Euro.

By car: The hotel is very near to the A3.

By plane: The closest airport is Frankfurt – Germany’s biggest airport. From there it is a 30 min drive by car or about 60 mins by public transport (local trains [all wheelchair accessible] one change, 8.25 Euros single fare).

The hotel offers a shuttle service – this can be booked when reserving your room by phone or email.

Children’s program

Will be available - we are working on it.

Conference languages

English and German will be the conference languages and all presentations and questions will be translated from English to German and vice versa. Members of our organisations also speak Croatian, Turkish, Spanish and Dutch and are very happy to help you if you have any detailed questions..

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