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McArdle exercise testing workshop, 11 and 12 July, Madrid, Spain

The workshop is organized within the framework of the European project EUROMAC, a European registry for McArdle Disease and very rare muscle glycogenolytic disorders. The EUROMAC workshop aims to improve the evaluation and care of people with McArdle disease.



What is the purpose of the workshop?

 

What are the topics of the workshop?

The workshop is organized within the framework of the European project EUROMAC, a European registry for McArdle Disease and very rare muscle glycogenolytic disorders. The EUROMAC workshop aims to improve the evaluation and care of people with McArdle disease.

 

What are the topics of the workshop? EUROMAC International Registry Exercise physiology Practical sessions on exercise testing and demonstration of the second wind

 

 

 

Who can attend?

 

Is there any cost to attend?

The workshop is targeted for both health professionals working on McArdle’s Disease and patients. Therefore, physicians, neurologists, physiotherapists, researchers working on neuromuscular glycogenoses, nutritionists, caregivers, groups from patient associations, individual patients and their families.

 

No, attendance to the workshop is free of charge, but all the people wishing to attend will have to cover their travel and accommodation costs. See below under “how to get there” and “accommodation suggestions” to plan your trip.

 

 

 

IMG 2014

 

IMG 2014

 

How do I register to the event?

You can fill in all the compulsory fields below. Your registration data will be stored securely and will be only visible to the workshop organizers, unless you clearly specify that you agree to share your contact details for networking purposes with other patients and health care professionals. After registering, you will receive an email confirming completion of the procedure, and you will be notified of your admission to the workshop as per the timeline indicated below. See ”important dates” for this. For logistic reasons, attendance will be limited to 50 participants on a first-come, first-serve basis, except for the patient recruited for exercise testing.

 

What does the program look like?

The workshop program is currently being finalized and will be updated here. However, you can see a glimpse of our preliminary agenda here below and come back for further updates. The workshop will be purely practical, so posters no presentations are foreseen other than those mentioned in the program:

 

Day 1- 11 July 2014

15.00 

Registration

   
15.30-18.25

Introduction and Theoretical Explanation. Chair persons: Alejando Lucia, Universidad Europea de Madrid, and Ros Quinlivan, MRC Centre for Neuromuscular Disease, National Hospital for Neurology and Neurosurgery

   
15.30-15.40
EUROMAC registry, what is it? Ramon Martí, Vall D’Hebron Research Institute, Barcelona, and EUROMAC coordinator
   
15.40-16.10
Background to McArdle disease and related disorders, Toni Andreu, Instituto de Salud Carlos III, Madrid, Spain
   
16:10-16.20
Discussion and Questions
   
16.20-16.40
Coffee break and networking
   
16.40-17.10

Psychological aspects of McArdle Disease, Jatin Pattni, MRC Centre for Neuromuscular Diseases, London, UK

 

 

17.10-17.50

Background to exercise physiology, Alejandro Lucia, Universidad Europea de Madrid, Spain

   
17.50-18.00
Discussion and Questions
   
18.00-18.15
Outcome measures in McArdle disease and related disorders, John Vissing, Rigshospitalet, Copenhagen, Denmark (TBC)
   
18.15-18.25
Discussion and Questions
   
18.25-19.25
First set of exercise tests (12 minute walk test)
   
19.30
Welcome reception


Day 2- 12 July

09.00

Coffee

   

09.30-13.00

First batch of three different exercise tests run one after each other (consecutively): 2nd wind-Vo2peak-strength test. (Alfredo Santalla & Alejandro Lucia, Universidad Europea de Madrid). One coffee break will be served at 11.00 am

   

13.00-14.00

 Lunch break

   

14.00-17.00

Second batch of three different exercise tests run as above. Check back for further details on each slot. One coffee break will be served at 16.00 pm

 

 

17.00-17.30

Closing remarks

   

 17.45

 Workshop ends

 
 

Where does the workshop take place? How do I get there?

The workshop will take place in the campus of the Universidad Europea of Madrid, in the outskirts of the city. The closest airport is Madrid Barajas. We will arrange a shuttle service from Madrid airport to the workshop location on Friday 11 July before the start of the workshop. Further details on optional shuttle service to the airport for the return after the end of the workshop will be provided later on, once we are informed on attendee’s flight schedules.

Full address of the workshop location: Calle Tajo, s/n 28670 Villaviciosa de Odón, Madrid, Spain

 

Where can I stay?

We have arranged special rates with the following hotel closely located to the workshop venue:Hotel Ciudad de Mostoles: rate 59,40€ for single room, 67,70 € for double room. 

http://www.hotelciudad-demostoles.com/index.htm?lbl=ggl-en&gclid=CNbe5bDd5LwCFYjpwgodL3UA1g.

To make your booking, write to: comercial@h-ciudadmostoles.com and mention the code “EUROMAC” upon booking. Check back here for updates for further accommodation options.

 

Important dates

Deadline for registering: 10 May 2014

Communication of accepted attendants: 20 May 2014

Communication of patients recruited for exercise testing: 20 May 2014

 

Registration to the event is now closed. For further information, please contact: xavier.ortega@vhir.org

 

 CLICK BELOW TO DOWNLOAD THE SPEAKERS' PRESENTATIONS:

1- EUROMAC registry, what is it? Ramon Martí

2- Background to McArdle disease and related disordersRos Quinlivan

3- Psychological aspects of McArdle DiseaseJatin Pattni

4- Background to exercise physiology, Alejandro Lucia and Alfredo Santalla

5- Outcome measures in McArdle disease and related disorders, John Vissing

6- First set of exercise tests (12 minute walk test), Richard Godfrey and Sherryl Chatfield

 

Organized by: Ros Quinlinva (UCL), Alejandro Lucia (UEM), Miguel Angel Martín (H12O-CIBERER), Ramón Martí (VHIR-CIBERER) and Xavier Ortega (VHIR-CIBERER).

 

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EUROMAC
Avda. Barcelona nÂș 174 1Âș 2ÂȘ
08700 Igualada (Barcelona)+34 934 894 054info@euromacregistry.eu


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