A session was organized by the Brain, Mind and Pain (BMP) Interest Group of the European Parliament on “Optimising Patient Relevant Outcome Measures for sustainable healthcare systems and strong economies”.
Keynote Addresses were presented by Laure Delbecque, Associate Director of Pharmerit International, who pointed out that Quality of life (Qol) questionnaires should be based on patient interviews and Anna Graca, Programm and Policy Officer at the European Commission, who presented the new programm “Horizon Europe”.
Grünenthal’s Chief Commercial Officer Mark Fladrich spoke as a panelist and strengthened Grünenthal’s active engagement in involving patients from early on in our clinical trials set-up. He also mentioned the public-private partnership IMI (Innovative Medicines Initiative) and the multi-stakeholder platform SIP (Societal Impact of Pain) as perfect examples of reform in the patient-centered measured outcomes.
Kaisa Immonen, Policy Director of European Patients’ Forum, stated that Patient Outcome Measure are not enough to be reported, they should be prioritised. This led to a discussion with the other panelist, the outcome of which was that this practice should be implemented into clinical trials, investigator initiated trials (IITs) and all other initiatives.
About 100 participants from multiple stakeholder organisations participated in this interactive Event in the European Parliament.

BMP Meeting about Patient Reported Outcome Measures in EU Pa…

A session was organized by the Brain, Mind and Pain (BMP) Interest Group of the European Parliament on “Optimising Patient Relevant Outcome Measures f…

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The Thematic Network on SIP held its first webinar dedicated to discuss the

First interactive webinar on the 2018 Thematic Network on SIP

The Thematic Network on SIP held its first webinar dedicated to discuss the "Challenges and opportunities to address the Societal Impact of Pain in th…

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The European Network of Fibromyalgia Associations (ENFA) held a conference in Malta this year, coinciding with the International Fibromyalgia Awareness Day on Saturday 12 May.
The main aim of the conference was to inform and empower the representatives of European Fibromyalgia associations, by giving them the opportunity to meet and discuss with international colleagues the current fibromyalgia landscape.
A parliamentary session took place on the previous day, where the President of ME, CFS and Fibromyalgia Alliance Malta, Ruth DeBono, and the President of ENFA, Souzi Makri, gave speeches about the state of fibromyalgia on a European level.
A conference session was formally opened by Marie-Louise Coleiro Preca, President of Malta, where motivating lectures and speeches were given by professors, patient-organisations representatives and real patients, who all focused on the need to integrate people, suffering from fibromyalgia, into our society, work places and home environment.
All attendees confirmed the importance of providing a social model for people with invisible disabilities, shifting away from the medical model and the need to challenge the societal norms, which people with disabilities are still expected to conform.
You can read the full conference report, provided by ENFA, here.

In every disability, there is an ability!

The European Network of Fibromyalgia Associations (ENFA) held a conference in Malta this year, coinciding with the International Fibromyalgia Awarenes…

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The first of its kind, the inaugural Brain, Mind and Pain Patient-Centred Innovation Grant has announced its winners on Wednesday 20 June at 13h00 at the Leopold Hotel in Brussels. 
 
 
 

Brain Mind and Pain Grant puts Patients in the Center

The first of its kind, the inaugural Brain, Mind and Pain Patient-Centred Innovation Grant has announced its winners on Wednesday 20 June at…

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Another national Societal Impact of Pain (SIP) initiative has been launched on June 26th in Spain. Several patient organisations and clinical experts came together with representatives from the Ministry of health and three other regional communities to successfully launch SIP in Spain. Participants  reflected on the challenges of pain care and management in Spain, and shared their input on the differences per regional community. 
The SIP kick off meeting has represented the ideal forum to present and discuss the objectives of SIP Spain and topics to work on in a national SIP symposium planned for November 2018. 
Three working groups have been built to work on the topics selected by the group, which are the following:

Pain as a quality indicator of healthcare systems
Coordination and continuity of healthcare assistance
Management of chronic pain and vulnerable/special needs population

This is another great example how a national SIP platform has been launched based on the experiences and strategy of the European SIP platform. You can see the presentation and the report from the meeting here.

SIP Spain goes live!

Another national Societal Impact of Pain (SIP) initiative has been launched on June 26th in Spain. Several patient organisations and clinical exp…

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Smart Healthy Age Friendly Environments (TN SHAFE) is one of the two other Thematic Networks 2018, coordinated by Cáritas Coimbra and AFEdemy and assigned by the European Commission (DG SANTE). TN SHAFE is presenting an online survey, which is an essential part of the Thematic Network 2018 SHAFE.
The focus of SHAFE in 2018 is on people with chronic diseases and impairments and the use of eHealth and mHealth. 
Ideas/projects on how to achieve better quality for less investment are expected. SHAFE will recommend on funding and policy measures of the European Union to enhance technological development and building industry for smart environments through the presentation of a Joint Statement in November 2018.
The questionnaire is open until June 30th and will take about 10-15 minutes of your time. You can join the survey here  – where you will be asked to choose one category and this will link you to the appropriate questionnaire.
The summary of the survey will be published on the Thematic Network SHAFE Website and on the European Commission’s Health Policy Platform.
 

Join the survey of Smart Healthy Age Friendly Environments u…

Smart Healthy Age Friendly Environments (TN SHAFE) is one of the two other Thematic Networks 2018, coordinated by Cáritas Coimbra and AFEdemy and assi…

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The German Pain Society e.V claims that the aim of pain research should be the therapeutical needs of the patients. With its recently published agenda

German Pain Society submits a research agenda

The German Pain Society e.V claims that the aim of pain research should be the therapeutical needs of the patients. With its recently publis…

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On May 31st, the French Society for the Study and Management of Pain (SFETD) and the pharmaceutical company Grünenthal have launched the national Societal Impact of Pain (SIP) platform in France. Many healthcare professionals participated in this meeting with the title “From a journey of wandering to a course of care”. You can find more information in French on the website of SFETD.

Launch of SIP in France!

On May 31st, the French Society for the Study and Management of Pain (SFETD) and the pharmaceutical company Grünenthal have launched the national Soci…

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Gout is the most common form of inflammatory arthritis in Europe, yet awareness of it is relatively low. Existing data indicates that Gout is a very painful disease which has a significant impact on patients’ lives. Thus, a European online survey has been designed together with patient and clinical experts to give people with gout a voice.
The survey has been launched at the EULAR 2018 congress in Amsterdam together with several patient organisations. The results will be shared and communicated in November 2018. The Survey can be opened here.
The flyer to the survey can be found on our media page.

Launch of the Patient Voice in Gout survey at EULAR 2018 in …

Gout is the most common form of inflammatory arthritis in Europe, yet awareness of it is relatively low. Existing data indicates that Gout is a very p…

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The European Commission invites for the first Webinar on June 25th on the SIP Thematic Network. All SIP endorser are invited to contribute to the discussions on the Joint Statement and the related Framing document.

Join the 1st Webinar on the SIP Thematic Network!

The European Commission invites for the first Webinar on June 25th on the SIP Thematic Network. All SIP endorser are invited to contribute to the disc…

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