Stand on your own – Adult MPS patient meeting in Germany
This fellowship has now closed and is not accepting any more applications.
Adult MPS patients meeting
STAND ON YOUR OWN
October 4 and 5, 2018
Maritim Hotel Gelsenkirchen, Germany
For the first time MPS Europe is organising Adult MPS patients meeting on 4th and 5th October 2018 in Maritim hotel Gelsenkirchen, Germany. The goal of this meeting is to encourage adult MPS patients to be independent – stand on their own. The idea is to gather adult MPS patients to meet up, exchange their experiences of living in different European countries and propose solutions for improving their own lives.
Some of the topics that will be discussed are: Living with MPS: what does a chronic disease mean for me? Vacation with or despite MPS, Living in Europe: put needs and expectations together, Working groups on different topics: employment situation, access to medical care, medicines and medical devices, social and psychological help and support, Raising the adult patients voice. Sessions will be in English and translation to German will be provided.
Thursday 4th October
20.00 – 22.00 Come together
Meet up, get to know each other, exchange, explaining schedule Moderators: Marija Joldic and Christina Lampe
Friday 5th October
9.30 -‐10.00 MPS Europe: what’s that and what does it mean for Adult patients?
Speakers : Marija Joldic and Alfred Wiesbauer
10.00-‐12.00 Living with MPS: What does a chronic disease mean for me?
Moderation: Adult MPS patient with psychologist
12.00 – 13.30 Lunch
13.30 -‐ 15.00 Vacation with or despite MPS
Lecture: Simon Bond and Christina Lampe
15.00 – 15.30 Coffee break
15.30 -‐17.00 Living in Europe: put needs and expectations together
Working groups on different topics: employment situation, access to medical care,
medicines and medical devices, social and psychological help and support.
17.00-‐18.00 Raising the adult patients voice
Discussion: Getting adult patients involved
Saturday 6th October *Optional
09.00-‐10.45 New therapies and clinical studies – what parents and patients need to know?
Discussion with Paul Harmatz, Julia Hennermann, Nicole Muschol, Brian Bigger
*This session is a part of MPS Germany Family conference programme and participants of Adult MPS patients meeting are invited to attend. Session will be in English/German with translation.
Funding for adult patient attendees
MPS Europe are offering a small number of free spaces, which includes basic travel, accommodation and meals.
Spaces are offered on a first come basis so don’t delay registering.
Funding is only for adult patients. If you require support of a carer/ personal assistant, they will need to fund their own travel, accommodation and meals. Please speak to the organisers for further information.
Accommodation and shuttle bus costs from/to airport Düsseldorf or train station Gelsenkirchen – hotel. Travel costs will be reimbursed as follows:
a. Travel by plane is reimbursed on the basis of economy class. Advanced booking is highly recommended, and low cost airline tickets are preferable
b. Travel by train is reimbursed to the amount equivalent to a 2nd class train ticket.
c. Travel by car is reimbursed at € 0.37 / km.
How to Register
Applications are now closed.