Family Conference 2025

Our next family conference will again take place over Ascension Day from May 29 – June 1, 2025 in Bad Nauheim at the Hotel Dolce.

All people with myotubular myopathy or other centronuclear myopathies, their families, carers, doctors and therapists are cordially invited to come to Bad Nauheim. Under the motto “10 years strong together! – We want to celebrate!”
we want to bring people with ZNM and their families together and give us much-needed support and confidence for our everyday lives. A fun children’s and teen program will be offered in the meantime. On Sunday we will all go on an exciting family outing together.

Venue of the event:
Hotel Dolce Bad Nauheim

The conference will take place at the Hotel Dolce Bad Nauheim, about 45 km north of Frankfurt am Main.

The rooms in the hotel must be booked by yourself. All rooms are barrier-free. The costs listed below incl. Breakfast is included per night. >Here is an overview of the rooms

Wer sich einen Eindruck vom Hotel verschaffen möchte, findet >hier einen virtuellen Rundgang. Einen Blick in die Tagungsräume im angeschlossenen Kurhaus findet sich >hier.

• 129 € Single room
• 149 € double room
• 189 € Suite as single room
• 229 € Suite as double room
• 35 € for additional persons
  For additional persons (up to max. 2 persons per room) we charge 35 € per person and night incl. breakfast and use of the SPA area. including breakfast and use of the SPA area.

We have also reserved 3 fully accessible rooms. We will allocate these rooms if you contact us.

Registration is now open until Febuary 28!

Two registrations are necessary! One with us for participation and the second for booking the hotel rooms directly with the hotel:

1. registration for participation in the conference

Click here for internal registration. Link

2. booking of hotel rooms at the Dolce Bad Nauheim

Please book your room directly with the Hotel Dolce Bad Nauheim by Febuary 28, 2025. Unless you need one of the barrier-free rooms. Then please send an e-mail to mareen.bockstette@znm-zusammenstark.org

We have reserved a room contingent with a special price for our event, which you can take advantage of when booking until Febuary 28th. After that date, we cannot guarantee that rooms will be available.

E-mail: reservierung@dolcebadnauheim.com
Phone: +49 6032 303 0 (reception manned 24 hours a day)
Keyword: ZNM Family Conference 2025

Special cancellation conditions: We were able to negotiate that in case of illness the rooms in our contingent can be canceled free of charge up to 48 hours before departure ! We require written proof from you should this occur.

preliminary program 2025

The preliminary version of the program can be found here.

Thursday 29 May 2025 (German language – only for members of ZNM Together Strong) 

14:00 Arrival of participants; check-in in the foyer   

16:00 Welcome and General Assembly in the Sprudelhof (accompanying children’s programme) 

18:00 Joint dinner   

20:30 Meeting of adults – with introduction of new members in the PUB 

From 20:30 the youth meets in the Sprudelhof for music/film/get together.   

Friday, 30th May 2025 (German language, workshops and lectures on the subjects of everyday mastering / aids / legal advice – for all those concerned in the German-speaking area) 

From 9.30 am – 6.00 pm Presentations and workshops on various topics 

– Nutrition counselling especially for ZNM patients 

– Individual genetic counselling with Johann Böhm 

– Resuscitation training for parents and adults 

Parallel from 8.45 UHR – 18.00 UHR Children’s programme (3 offers for different ages) 

Saturday, 31st May (German/English with live simultaneous translation; scientific lectures and interviews) 

9.30 am – 5.30 pm Presented scientific lectures and interviews    

– Johann Böhm, Susan Treves, Nicol Voermans, Marc Bitoun and Anna Sarkozy have already confirmed their participation. 

Parallel from 8.45 am – 6.00 pm Children’s programme (3 activities for different ages) 

8.30 pm Anniversary party in the pub: 10 years Together Strong with music and dance 

8.30 pm Young people’s get-together at the Sprudelhof 

Sunday, 01 June 2025   

10:30 am to 11:30 am Family outing  in the near park 

12:00 Lunch together (individual departure)   

Arrival

We will be happy to assist you with your journey. The best thing to do is to leave us a message in the registration form. It is about 1.2 km on foot from the train station to the hotel.

Additional information is available here:

• A pdf with important information (hospital, etc..)
• There is also a sketch with the route options here.

Costs

Thanks to some donations, the conference packages on Friday and Saturday are free of charge for all people with myotubular myopathy, other centronuclear or central core myopathies, their relatives and carers!
The conference packages include participation in all workshops and lectures as well as dinner on Thursday, lunch, dinner and coffee breaks on Friday and Saturday.

Please note that travel costs must be covered by the participants themselves. “ZNM-Zusammen Stark” covers the accommodation costs for the first night from May 29th to 30th May as well as for the 3rd night from May 31st. – June 1st. The costs for the second night (saturday to sunday) are to be borne by yourself. People who would like to participate but cannot afford to attend the conference despite this partial assumption of costs should contact the association’s board – we still have the possibility of awarding travel grants.

All of this costs us a lot of money as an association. For this reason, we look forward to further donations to finance the Family Conference 2025.

Other guests are welcome. However, we ask for your understanding that in these cases an additional fee of 150 euros per person per conference day will be charged to cover our own costs. This amount covers participation in the conference on Friday and Saturday including lunch, dinner and coffee break.

Conference languages

This year’s conference will be held on SATURDAY in German and English.

Sponsoring

Would you like to support us as a sponsor or are you looking for a suitable exhibition space during the conference?

Please get in touch with our contact person Barbara Preiß.

Here you will find valuable information on our sponsorship offers.

Children’s program

There will be a children’s program on Friday and Saturday. A mobile kindergarten invites children to play, romp around, do face painting, crafts and much more. An outdoor bouncy castle will provide variety. And for the gamers among you, we will be providing a gaming monitor

Entertainment for young people

We also have a few things planned for our teenagers at our conference. For example, there will be a “gaming station” where there will certainly be a battle or two.

Further questions

If you have any further questions about the conference, please contact Judith Wartenburger at judith.wartenburger(at)znm-zusammenstark.org.

Many thanks to our sponsors and supporters.