The voice of people

with MS in Europe

News from Europe

EMSP represented at the EAN Congress

 

 

EMSP was represented at the 1st Congress of the European Academy of Neurology (EAN), held on 20-23 June, in Berlin, Germany.

 

Chief Executive Maggie Alexander joined the delegation of our partners from the European Federation of Neurological Associations (EFNA).

 

The Congress brought together over 6,000 stakeholders from across the world, providing an excellent opportunity for EMSP to showcase some of our flagship projects, such as Paving the Path to Participation and Believe and Achieve. 

EMSP at EMA's Working Party for Patients and Consumers: Clinical trials, benefit-risk evaluation, interaction guidance

 

EMSP was represented at the June meeting of the Patients' and Consumers' Working Party (PCWP) established by the European Medicines Agency (EMA). 

 

EMSP's External Affairs Director Christoph Thalheim outlined the three focus areas of the meeting:

 

  • PCWP's involvement summarising clinical trial results for laypersons.
  • Patient involvement in benefit-risk evaluation
  • Interaction guidance in the framework of the European Patients' Academy on Therapeutic Innovation (EUPATI

Christoph Thalheim made a special mention about the clinical trial results for laypersons, saying that once published they will be very important for EMSP members because they aim for a more patient-oriented language. 

 

The meeting agenda can be found here

 

More information on PCWP can be found here

 

70-year-old MSer is fundraising for MS research: Walking a world of friendship for MS

 

 

An 70-year-old person living with MS in Canada will be arriving in Belgium, on 14 August, as part of her global tour to raise awareness on the challenges of multiple sclerosis and also fundraise for MS research.

 

To mark her 70th anniversary, Angela Kirby embarked on a 13-country trip on 27 May - World MS Day. She intends to walk 5 kilometres around the world, naming her challenge 'A Walk World of Friendships for MS'.

 

"I am also acknowledging the 20th anniversary of my first MS exacerbation. Knowing we are all waiting for that elusive cure, I felt I that while I am still able, I should make a concerted effort to raise more funds, wherever I could, in whatever country I could, to fund research while at the same time getting to see family and friends around the world", said Angela Kirby in her message to the broader MS community in Europe.  

 

Donations for Angela's Walk can be made by accessing this link on the website of the Multiple Sclerosis International Federation (MSIF).

 

More informations on Angela Kirby's campaign can be found on the dedicated Facebook page

Add your signature to EMSP's Employment Pact

 

 

 

 

 

 

 

 

 

The European Multiple Sclerosis Platform (EMSP) is asking fellow patient organisations, national and European decision-makers and European employers to support a recently launched Employment Pact for people with multiple sclerosis (MS) and other neurodegenerative diseases.

 

Please click on the red button to fill in your name, organisation and email in the enclosed form and sign our Pact. 

 

EMSP represented at DIA Europe meeting

 

EMSP’s Director of External Affairs Christoph Thalheim represented our organisation at the Drug Information Association’s (DIA) meeting of European health stakeholders, organised on 13 April in Paris, France.

 

Mr Thalheim was part of a panel discussion with representatives of DG Health, European Medicines Agency (EMA) and several NCAs (National Competent Authorities). His topic as leading panelist was: “Main patients’ benefits from 50 Years of EU pharma legislation”. The presentation was structured around four main headings:

 

  • History of EPF as unique European voice of 150 million patients and EMSP’s role as co-founder
  • Patient involvement in regulatory work – the example of EMSP – EMA collaboration
  • Improvements achieved within the clinical trial regulation through active patient advocacy contributions
  • Equal access to high standard healthcare in Europe – will the new cooperation between EMA and HTA be the pathway to end current inequalities?

Among the key benefits for EMSP’s presence at the DIA meeting, one stood out: increased visibility as example of good practice for active patient involvement and advocacy work in regulatory processes.