European Family Conference 2018 – July 14 & 15, London

#TogetherEvenStronger2018

We are delighted to invite all those affected by myotubular and centronuclear myopathies their families, doctors and carers to our family conference. As in 2016, the conference will be hosted jointly by the Myotubular Trust and ZNM – Zusammen Stark! (CNM – Together Strong!)

All participants / alle Teilnehmer
All participants of the Family Conference 2016 in Frankfurt

Outline programme

Friday, July 13th

Informal get-together as and when people arrive and settle in.

Saturday, July 14th, 9 am – 6 pm: conference programme

The Conference, chaired by Professor Francesco Muntoni will be presented in both German and English. Scientific presentations will include recent developments on potential treatments for all centronuclear myopathies, such as gene therapy, DNM2 down-regulation and drug repurposing, among others.

In the afternoon we are planning a series of workshops on topics such as ventilation, physiotherapy, nutrition, independent living, holidaying and wheelchair services.  If you have any specific wishes or ideas, do feel free to contact us with your suggestions – contact@myotubulartrust.org

Sunday, July 15th, 9 am – 12 noon: conference programme and closing

Further workshops

Venue

Holiday Inn, Bloomsbury Coram Street, London WC1N 1HT – this hotel is a few streets away from the world renowned Great Ormond Street Hospital for Children

Registration for the conference

Registration form will be available by 1st February 2018.  If you would like to pre-register your interest, so we can inform you when the registration form goes live, please email contact@myotubulartrust.org. 

Costs

Attendance at the conference, including lunch and dinner, are free for those affected by myotubular and centronuclear myopathy, their families and carers.  However, you will be responsible for your own accommodation costs.

Other guests are welcome to attend the conference for the net cost of £100 per person per day including lunch, dinner and coffee breaks.  Accommodation is at your own expense.

Between now and the conference, the organising team will be working hard at fundraising to pay for this event.  If you can help in any way or have any ideas, we would be immensely grateful and would love to hear from you.

Spiel draußen / playing outside
Children programme during the Family Conference 2016 in Frankfurt

Children’s programme

There will be a full children’s programme for different age ranges, designed, managed and staffed by professional and experienced child care providers.

Conference languages

As mentioned above, the family conference will be simultaneously translated from English to German and vice versa. If you do not speak English or German, but still would like to attend the conference, please contact Jennifer Bilbao

Members of our organizations also speak Croatian, Turkish, Spanish, Dutch as mother tongue and are very happy to help you in case you have any detailed questions.

 

Please watch the Myotubular Trust and ZNM – Zusammen Stark e.V. (CNM – Together Strong!) websites for updates and further information, including the full agenda.