Stand on your own – Adult MPS patient meeting in Germany

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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.

Agenda
 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
Working  Groups

 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.