2018

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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Dr. Saskia Decuman, ergotherapist and expert from the Belgium Institute for Public Sickness Insurance and Handicaps (RIZIV), has been convinced of the benefits to reintegrate people with chronic pain into work for a long time. It is now time for recommendations to be transposed into policy guidelines.
The Knowledge Centre of the RIZIV, led by Dr. Saskia Decuman, has been working closely with the international multi-stakeholder platform SIP (Societal Impact of Pain) for a long time. In this way, the centre seeks to bring the results of the re-integration of people with chronic pain into concrete input into the society and provide its expertise to the SIP platform.
The full publication can be found here.

How to reintegrate people with chronic pain into society by …

Dr. Saskia Decuman, ergotherapist and expert from the Belgium Institute for Public Sickness Insurance and Handicaps (RIZIV), has been convinced of the…

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On April 01, 2018 a research project with the name IMI-PainCare was launched by a consortium from academia, small and medium-sized enterprises (SMEs), pain societies, patient organisations and companies from the pharmaceutical industry.

Public-private partnership tackles major challenges in pain care

On April 01, 2018 a research project with the name IMI-PainCare was launched by a consortium from academia, small and medium-sized enterprises (SMEs),…

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A Jury composed exclusively of patients and patients’ representatives ensures that the winning project(s) really represent the most valuable solution(s) for the patients, from a patient perspective.
The winners of the Brain, Mind, and Pain Grant will be announced in a ceremony after the MEP Interest Group on Brain Mind and Pain’s Meeting in the EU Parliament on June 20th.
Read more about the BMP patient-centered innovation Grant here.
 

BMP Patient-Centred Innovation Grant – the winner(s) will be…

A Jury composed exclusively of patients and patients’ representatives ensures that the winning project(s) really represent the most valuable solution(…

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The challenge of migraine as an unexplained disease means that it is difficult to treat due to a variety of reasons including scientific, social, financial, and political. The mission of the Headache and Migraine Policy Forum is to advance public policies and practices that promote accelerated innovation and improved treatments for people suffering from headache and migraine by:

Encouraging the advancement of headache science and innovation
Supporting the education of patients, healthcare providers, and other stakeholders about policy issues that impact access to new and existing therapies
Highlighting the need for improved, multimodal means of preventing and treating headache and migraine
Furthering access to appropriate prevention and treatment options for all patients

Click here for more info on AfPA’s (Alliance for Patient Access) Headache and Migraine Policy Forum. 
 

AfPA launches Headache and Migraine Policy Forum

The challenge of migraine as an unexplained disease means that it is difficult to treat due to a variety of reasons including scientific, social, fina…

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Thanks to all of you who have taken part in and shared our Young People's survey so far. We have had a fantastic response but hope to hear from more of you. The survey is available in eight languages and takes just seven minutes to complete. Closing is on May 21st!
Our objective  is to gain an understanding of the biggest issues affecting participants in their daily lives and also to learn about their relationships with and opinion of patient groups. Information gathered from this survey will be used in the development of EFNA’s future workplans, ensuring that they and their member organisations are working in the best interests of those they represent.
Please help us to disseminate the survey by sharing it with your network – via email, newsletters and social media – and encourage others to do the same!
Click here for more information, including a news release and language links.

EFNA survey of young Europeans with neurologial conditions

Thanks to all of you who have taken part in and shared our Young People's survey so far. We have had a fantastic response but hope to hear from more o…

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Call for Action - What are we asking of you?
To all our partners, endorsers and SIP stakeholder group members we ask to share any documents or links to web pages they deem relevant on the following topics:

Data and documents on the impact of pain on societies, economies and people (on national and/or European Level)
Existing policies addressing the societal impact of pain (national and European)
Existing advocacy initiatives addressing the societal impact of pain
Existing research initiatives addressing the societal impact of pain
Existing initiatives to educate the health workforce and patients on pain 

Documents here above could represent your own organisation’s initiatives, or initiatives and actions that you know they exist and you think they relate to the proposed subjects. We are building a knowledge base and would like to include as much as possible of the literature on these Topics.
How to contribute exactly?
You can send the documents or relevant links to sources to Vittoria.carraro@efic.org and at a.pop@pae-eu.eu. Should you have any doubts or questions, please don’t hesitate to contact us both at the same addresses.
Specifications on the documents: we understand that there are a lot of initiatives in several European languages, but for the scope of this initiatives we need to limit ourselves to English.
To engage with the Societal Impact of Pain partners at national level, please follow our ongoing work on creating national societal impact of pain platforms here.
Deadline: please provide your contribution by the 11th May 2018.
Further Information about the SIP Thematic Network here.

SIP Thematic Network - We need your help now!

Call for Action - What are we asking of you? To all our partners, endorsers and SIP stakeholder group members we ask to share any documents or links t…

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Our Societal Impact of Pain (SIP) platform is one of only three topics selected for the prestigious Thematic Networks program in 2018!  
On 10 April, the SIP delegation represented by Vittoria Carraro (EFIC), Joop van Griensven (PAE), Anca Pop (PAE) and Gudula Petersen (Grünenthal) met with the European Commission for the kick off meeting on the Thematic Network. The meeting was an open discussion with the Commission running for over 4 hours together with representatives from all three Thematic Network Groups.
The Commission representatives have been very supportive and provided valuable guidance on how to produce a Joint Statement and how to build on other existing initiatives.
What's next?

By mid of June: submit first draft of the joint Statement
End of June: first WebEx Webinar with the Commission and other members of HPP with the objective to call for comments and endorsement

We need the support of all SIP Partners and Endorsers to make the most of this fantastic opportunity!
In the upcoming days we will provide further guidance on how to contribute to the SIP Thematic Network and build on all the great work the SIP platform has done to date!
More Infos about the Thematic Network here
 

Exciting meeting at the European Commission - Launch of Them…

Our Societal Impact of Pain (SIP) platform is one of only three topics selected for the prestigious Thematic Networks program in 2018!  On 10 Ap…

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Fantastic News! The Partners for a national Societal Impact of Pain (SIP) platform in France came together and have signed the Charter. Invitations have been sent out to learning societies and patient associations for a steering committee on May31.
We wish the SIP France Team great success and are waiting for the next national SIP platforms to follow soon.

SIP France goes live!

Fantastic News! The Partners for a national Societal Impact of Pain (SIP) platform in France came together and have signed the Charter. Invitations ha…

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