Raising Awareness for MS

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Raising Awareness for MS

• Activities of the EMSP
• June 2002 March 2004

Responsible within the EMSP ExCom Dorothea
Pitschnau-Michel M.A. Vice President
EMSP Michael Willis, Past President
EMSP Antonella Moretti, Board Member
EMSP Christoph Thalheim, Secretary General EMSP

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1st European MS Awareness Day 25th June 2002,
EU Parliament Brussels

• Chair

Catherine Stihler, MEP
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• 1st European MS Awareness Day 25th June 2002,
  EU Parliament Brussels

Topics

• Barriers to access to care and treatment Peter
  Kauffeldt, President EMSP

• Healthcare lottery for MS-Patients in Europe
• Emer Cooke, European Commission

• EU funded research projects in the field of MS
  Prof. Alan Thompson, Ectrims

• Recent developements on world-wide level in the
  fight against MS
• Prof. Jürg Kesselring, Switzerland

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1st European MS Awareness Day 25th June 2002,
EU Parliament Brussels

• Exhibition

• Multiple Sclerosis History and Research

Participants

• 80 participants from
• AUT, BEL, CZE, DNK, FIN,
• FRA, GER, GRC, ITA, IRL,
• LTU, NLD, NOR, POL, PRT,
• ROM, SVN, ESP, GBR

• 21 MEPs

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• 1st European MS Awareness Day
• 25th June 2002, EU Parliament Brussels

Goals

• Raising awareness for MS
• and the problems of Persons
• with MS (PwMS)

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• MS INFORMATION HOURS

Implementation of continuous informal meetings in
the EU Parliament under the leadership of
Catherine Stihler, MEP
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• 1st MS Information Hour
• 19th February 2003, EU Parliament

Topics

• Founding of a MS Interest Group within the EU
  Parliament

• Presentation of EMSP major goals

• EU-funding for research

• Equal access to therapy and care

• Universal access for PwMS

• Employment for PwMS

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• 1st MS Information Hour
• 19th February 2003, EU Parliament

Goals

• Establishment of a permanent
• MS Interest Group
• (more over 80 MEPs demonstrated
• interest)

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2nd MS Information Hour 12th November 2003, EU
Parliament

• Topics

• European Parliament Report on MS
• Rapporteur Uma Aaltonen, MEP

• European Guidelines on Patient Therapies
• Speaker Prof. Peter Rieckmann, Germany

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2nd MS Information Hour 12th November 2003, EU
Parliament

• Goals

• To promote the MS Report

• Increasing awareness for Europe-wide standards

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3rd MS Information Hour 23rd March 2004, EU
Parliament

• Topics

• Past present activities in neuroscience,
  research with
• emphasis on MS
• Speaker Alain Vanvossel, European Commission

• Sylvia Lawry Centre for MS Research
• Speaker Prof. Jürg Kesselring, Switzerland

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3rd MS Information Hour 23rd March 2004, EU
Parliament
Goals

• Influencing and helping to boost research on
  brain
• diseases in general and on MS specifically

• Raising awareness for the need of funding
  research on MS

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EU MS Report

• Petition Committee Hearing on MS
  
• 9th July 2003, Brussels

• Submission of Louise McVays, PwMS,
• petition Equal access to drugs and treatment
• for MS Patients to the Petition Committee
  
• of the EU in 2001

• Discussion on the petition within the Petition
• Committee on 9th July 2003
• (approx. 70 participants)

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• Petition Committee Hearing on MS
  9th July 2003, Brussels

Results

• The decision of the Petition Committee to draw
  up
• an official EU report on MS

• Appointment of an official rapporteur
• Uma Aaltonen, MEP and PwMS

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• Official Presentation of the First EU Report on
  MS
• 18th December 2003, EU Parliament Straßbourg

• Presentation Uma Aaltonen, MEP

• Discussion with MEPs

Results

• Adoption of the MS Report by 240 MEPs in the
  European
• Parliament (Petition 842/2001) concerning the
  effects of
• discriminatory treatment afforded to persons
  with MS,
• within the European Union (2003/2173 (INI))

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• Official Presentation of the First EU Report on
  MS
• 18th December 2003, EU Parliament Straßbourg

Finally the EMSP and the supporters are very
happy about the great success!
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Raising Awareness for MS

• Activities of the EMSP June 2002 March 2004

Reached goals until now

• Steadily working MS Interest Group with MEPs
  in the
• European Parliament Chair
  Catherine Stihler, MEP

• 1st European MS Report adopted on 18th
  December 2003 by
• European Parliament Rapporteur
  Uma Aaltonen, MEP

• 1st EMSP recommendations on treatment of MS
  based on the
• German Konsensuspaper

• Close contact to members of the European
  Commission and MEPs
• regarding all fields of MS (research,
  treatment, care, employment
• etc.)

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