EU Civic Prize on Chronic Pain – Collecting good practices

Member News – July – August 2016
Active Citizenship Network

Active Citizenship Network, the European branch of Cittadinanzattiva, is launching the first ”EU Civic Prize on Chronic Pain – Collecting good practices”. The aim of this action is to evidentiate the existing of good practices in European countries in terms of struggle against pain.

The categories considered in the competition for the good practices are:

  • Patients’ empowermentTell us about your way of working with chronic pain and win!
  • Innovation
  • Professional education
  • Clinical practices

Submit your project in order to participate in the competition! The deadline for submitting your application is the 31st of August. The prize consists in an expenses-paid visit to another winner and a publication in a professional journal. You can find more information here , the project leaflet, the guide to fill in the form.
You are encouraged to share this news within your network and use the banner and the leaflet in this repect. 

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Newsletter August 2016 – Welcome

Pain Alliance Europe Newsletter – August 2016

Dear reader,

This edition of the Pain Alliance Europe Newsletter is especially interesting, with information on the association’s activities towards fulfilling its mission: to improve the quality of life for people living with chronic pain in Europe.Joop van Griensven - President PAE

More than anything, I am enthusiastic to see that not only is the PAE Board hard at work, but also work is constantly being carried at national level, through PAE’s member associations. It is one of our re-affirmed convictions that cooperation between stakeholders is absolutely necessary in order to achieve visible change to the status quo. You can read about several examples of such cooperation, both at national levels, as well as at the European level, in this edition of our newsletter.

Pain Alliance Europe is focusing mainly on lobbying activities, on raising awareness, and on gathering and disseminating relevant information. Regardless of the constraints set by our limited possibilities, I am proud to announce that we are doing a good job on all fronts, while building up PAE’s symbolic capital at the same time.

Having attended to the above during our first lustrum [five years], we are shifting our attention now towards achieving further positive results. However, we are going to need your help and support! Not only from you as an individual, but also from your respective associations and your fellow members. Also, we welcome any support from those of you who have never experienced chronic pain, but are sympathetic to our cause.

For more information on how you may offer your valued help on specific projects, please spend a moment reading the article on ‘the Written Declaration’ below, as well as the articles regarding the Red Balloon Project and the outcome of SIP ‘Time for Action’.

Not least, I encourage you to read the news from our members’ section, as it might offer you new ideas for your planning of next year’s events.

I wish you all an enjoyable summer break, with a refreshed start of your activities and of your continuous support for Pain Alliance Europe.

 

Joop Van Griensven

President Pain Alliance Europe

 

 

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Societal Impact of Pain – News 2017 – Malta

PAE News – July 2016
Malta to host the SIP Symposium 2017

A SIP Cooperative Partners’ Delegation traveled to Malta at the beginning of July, to undertake preparatory works for the 2017 SIP Symposium, to be held in Malta on June 8 and 9.

During this visit, the Delegation also attended a meeting of national Maltese associations working to develop a platform similar to SIP. The Delegation was invited to present information on what SIP is, on how chronic pain is perceived within healthcare systems and how it influences the society, and on the benefits of cooperation and involvement in the proposed platform.

The Delegation was pleased to find that the Maltese associations enthusiastically welcomed the SIP concept, and that they are keen to implement a similar system in Malta by the time the SIP Symposium takes place.

Save the dates for attending the SIP Symposium in Malta: June 8 and 9, 2017.

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European Brain Council

PAE News May-July 2016
European Brain Council (EBC) updates

Pain Alliance Europe is continuously working to strengthen its collaboration with the European Brain Council (EBC), an organization with considerable knowledge, experience and political influence across the continent. The relationship between the two organizations is mutually beneficial, with PAE having its own key strengths at the European level.

Pain Alliance Europe has already taken part in an EBC workshop on one of their newest projects, identifying together further benefits of strengthening relations on the long term.

The immediate challenge is to design a plan to achieve all proposed goals. We will be keeping you informed on the matter.

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Research Grant

PAE News – July 2016
Collaboration on Research Grant

Grünenthal GmbH approached Pain Alliance Europe with a proposal for a grant for young researchers who are developing research projects in collaboration with chronic pain patients’ associations which are PAE members. The main goal of this proposal is to facilitate direct research on actual patients’ needs.

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PAE’s mission is to improve the quality of life for people living with chronic pain, and we strongly believe that undertaking research projects on specific patients’ needs is one of the core activities that leads to accomplishing this mission.

 

Therefore, the PAE Board is already working with the Grünenthal Board on developing the necessary criteria and administrative framework for preparing the proposed grant programme. It is expected that this will be ready by the end of this year.

We will be sharing further information and progress updates through our newsletter and website, so stay tuned!

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Founding of APAN

PAE News – July 2016
Pain Alliance Europe attending founding of APAN

On Friday 22nd of July, 2016 Viorica Cursaru, from Myeloma Euronet, Romania, and PAE Board Member, attended the launching of the newly established APAN, the Romanian Association of Patients with Neurodegenerative Diseases (ROM – Asociatia Pacientilor cu Afectiuni Neurodegenerative din Romania)

Asociatia Pacientilor cu Afectiuni Neurodegenerative din Romania

Neurological patients, doctors and a representative from the Romanian National Agency for Medicines and Medical Devices have attended the event.

The President of APAN stated that the most important objectives of their association are to improve the quality of life for their patients and to advocate for a better access to treatment and medicine.

 

The launch date was connected to an international event, World Brain Day 2016, in order to sustain this endeavour of the World Federation of Neurology, whose topic this year has been Brain Health and the Ageing Population, aiming to raise awareness of age and neurological conditions and diseases associated with age.

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Lecture with Dr Diana Kadetoff

Member News – April 2016
Fibromyalgia Association of Sweden

On 24th of April, Fibromyalgia Association of Sweden arranged a lecture with Dr Diana Kadetoff, a prominent fibromyalgia researcher at the medical university Karolinska Institutet in Stockholm. She also works as a pain specialist at Stockholm Spine Center.

OnDr Diana Kadetoffset Triggers and Specific Gene Linked to Fibromyalgia

During the first part of her lecture Dr Kadetoff talked about fibromyalgia in general, and common triggers for developing the condition. Some of the triggers she mentioned were stress, sleeping disturbances, psychosocial factors, and infections. According to research there is evidence that fibromyalgia also has a genetic factor, but a specific gene linked to fibromyalgia has not yet been found. Dr Kadetoff thinks that the discovery of such a gene lies within the near future.

Research Findings

The second part of the lecture was focused on research. Some of the research findings that Dr Kadetoff talked about were: elevated levels of Substance P in FM patients (Substans P is a substance connected to pain), and low levels / deficiency of serotonin.

She also talked about her own research, which was noticed internationally when it was published in 2013. As far as they know, she and her research team were the first to find elevated levels of the pro-inflammatory cytokine IL-8 in the spinal fluid of FM patients.

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Pain UK at SIP 2016

Member News – May 2016
Pain UK

Pain UK at SIP 2016

 

Pain UK had a stand at the Societal Impact of Pain event in the EU parliament in Brussels in May.  The Pain Charter [https://painuk.org/pain-charter/] was on display and all the copies we had were taken by interested delegates.  Pain UK is working on having the Pain Charter accepted and displayed in healthcare venues around the country.

 

Marian Nicholson (trustee, Pain UK) was interviewed at the EU parliament on the reasons for the need for SIP.  You can see it here:  https://www.youtube.com/watch?v=jpR_kX8ZuyY

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The Written Declaration

PAE News – July 2016
The Written Declaration of Access to Employment for those affected by neurological disorders and chronic pain conditions

The Written Declaration of Access to Employment for those affected by neurological disorders and chronic pain conditions will be launched in autumn 2016. A written declaration is a request to the European Commission to undertake certain actions.

This Written Declaration, an initiative of the MEP (Member of European Parliament) Interest Group on Brain, Mind and Pain – coordinated by Pain Alliance Europe together with our colleagues at EFNA – needs to get signed by more than half of all MEPs, in order to come into effect.

Currently, the European Parliament consists of 751 elected MEPs. This means that the Declaration needs to be signed by at least 376 MEPs within just three months – with no second chances. And for that, we need your help! The involvement of national organisations and individuals is absolutely vital in ensuring that we will achieve this goal.

We will reach out to our members again after the summer break – in early September – with more information on how the process works. We will also provide the tools and resources that will facilitate your involvement, and your efforts to involve your members. You may always refer to the PAE website (www.pae-eu.eu) or www.brainmindpain.eu for additional information on the interest group.

Join the action!For now, please note in your calendar that the Declaration will be launching this autumn. If you are interested in supporting the Declaration, we would appreciate should you set some time aside each month, from September to December, to get involved in the process.

A successful Written Declaration can be a useful advocacy tool, at both the national and the European levels. We feel that, should it get ratified by the European Parliament, the Declaration will allow those whom you represent to gain access to employment opportunities and enhance their Quality of Life.

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Galician Rheumatological League @ SIP 2016

Member News – May 2016
Galician Rheumatological League

In May 2016 the Galician Rheumatological League took part in the SIP events in Brussels.  More than 220 representatives from health professionals’ organisations and stakeholders from more than 28 countries met in the European Parliament and Concert Noble to talk about the Societal Impact of Pain (SIP 2016 – TIME FOR ACTION). The scientific objectives of the Symposium where endorsed by 160 organizations that represent pain, amongst which was the LRG.

Th Galician Rheumatological League participated in an active manner in the “The Red Balloon Project” – a campaign of increase the visibility of pain through their social networks – before, during and after the event in Brussels.

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