Cluster Headache Day- March 21st

‘Arguably one of the worst pains known to man’

 

Announcing Cluster Headache Day– 21st March in European Parliament, Brussels.

The event will be held in the room Altiero Spinelli A1H-1 from 11.00 to 13.30.

Pain Alliance Europe is represented in this event by the President of the association, Mr. Joop van Griensven.

March 2017 – The European Headache Alliance (EHA) and European Headache Federation (EHF) announce the second ‘Cluster Headache Day’ event hosted by MEP Stevens on 21st March 2017.

Cluster Headache (CH) affects up to 4 in 1,000 people, similar to the incidence of Multiple Sclerosis and Parkinson’s Disease. Despite this, CH is under-recognized and under-treated. It is a searing pain described as a red hot poker piercing through the eye when the patient cannot remain still or lie quietly in a darkened room. Unlike migraine, which is more prevalent in women, cluster headache mainly affects men. The word ‘cluster’ refers to a period of time lasting weeks or months. An increase in the number of attacks peak at the equinox and are associated with seasonal changes and daylight hours.

The European Parliament event hosted by Flemish MEP, Helga Stevens includes presentations on Cluster Headache from a policy, medical and patient perspective.

MEP Helga Stevens highlights that for all those affected by CH timely and accurate diagnosis and appropriate treatment are key for patients.

Kalina Tyminski and Miguel Ángel Pascual, both patients, will give personal testimony focusing on the real-life experience of coping with Cluster Headache highlighting the impact on education, family life and workplace in particular.

Prof. Paolo Martelletti, President of EHF says “Cluster Headache treatment is soon going to have a new pharmacological preventative CGRP-based class that will help this desperate pain state”

Prof. Dimos Mitsikostas, former President of EHF, states that more than 600,000 people in Europe live with Cluster Headache with less than 50% consulting a specialist and more than a third of sufferers missing work at a cost of 7bn euro per year.

Ms. Bianca Ferraiolo, from Active Citizenship Network says this important initiative puts CH patients at the center when addressing critical issues of this much-underestimated disorder.

Elena Ruiz de la Torre, President of EHA explains that the activities of Cluster Headache day would include both online and offline activities as part of EHA’s public awareness campaign.

For more details, please visit:

  • www.europeanheadachealliance.org
  • www.ehf-org.org/last-news/

 

Contact details:

 

Elena Ruiz de la Torre, European Headache Alliance President

Email: elena@europeanheadachealliance.org   Tel:  + 34 639 66 99 65

Francesca Romana Britti, European Headache Federation Secretariat

Email: info@ehf-org.org           Tel: +39 06 36010376 Ext. 205

The Red Balloon project and cooperation

PAE News

 

The Red Balloon project campaign has now continued over six months and it’s closer to the next summer’s Charity run at the SIP event in Malta. Social media includes thousands of pictures of people with balloons from all over the Europe.

redbaloon“With the campaign we want Europe wake up and seen the wideness of the chronic pain problems and difficulties it cause at personal and economical levels” says Pain Alliance Vice President Liisa Mikkonen. “From Europeans approximately 20 % suffers chronic pain but still it is invisible. Most of the patient’s think they have a reason stay quietly in shadows; shame, occupation sensitivity, afraid of position at work, family or stigma.”

The Red Balloon project is supported by the Boston Scientific to whom the chronic pain is one of the main aspects. They want to diminish problems related to chronic pain and the negative images of pain patients.

Technical Communications Manager Tim Rae from the Boston Scientific Clonmel factory explains: “Every year The Boston Scientific arranges sites around the world event called ‘Everyone Makes an Impact Day’. During EMAI Day groups of patients are invited to visit Boston Scientific and share their feedback of therapies. Often employees have a possibility meet the patients personally. EMAI days are excellent way to remind ourselves that making active implantable medical devices is a journey we take with our patients from the moment a device concept is born, through product development to manufacturing and implant.

Maintaining the connection between employees and the patients is one of the most important aspects of Boston Scientific’s corporate culture. Not only does it help to keep our employees engaged, but it also is critical to improve the quality of patient care. Events like EMAI Day continually remind us that each person’s job in the company has an impact to many thousands of lives around the world.”

Liisa Jutila, Vice-President of Pain Alliance Europe, agrees: “the patient’s connection to industry is meaningful. The connection with real patients makes a difference when we challenge industries scientific knowledge to be innovative in order to improve existing therapies and create new ones. The main word is cooperation.”

It’s inspiring find out how people want chronic pain to be seen and noticed. Liisa continues, “I was honoured be one of the Boston Scientific patient speakers. But I was even more honoured be invited to join the workers’ evening. People were genuine and real with their thoughts and questions of chronic pain. When they talked with us it was kind of way to their coworkers bring out their own pain and how it affects their work and life overall.”

PAE has put up national organisations to take the challenge. We encourage associations and active people connecting with industry, politicians, decisions makers and other patient associations rise up the problems related to chronic pain, in all aspects of life.

Getting together we are stronger and truly, everyone makes an impact.

 

Welcome

Newsletter PAE  2017 – Welcome!

Dear reader,

Ijoop-van-griensvenn this first newsletter of the year 2017 we would like to give you an update on what PAE and the board has been doing the past period and is planning to do the upcoming months.

Although you would expect that the holiday season would also be applicable for PAE and the board it didn’t feel like that. A lot of things were going on and several preparations / activities should have been started already.

The written declaration was one of it. The Societal Impact of Pain (SIP) Symposium to be held in June in Malta. The progress of the Red Balloon project. The Brain, Mind and Pain interest group. And last but not least our own survey. Then there is the annual general assembly and all the paperwork which is needed for that. More on all these topics you can read in this newsletter.

Discussions and meetings with partners in grant applications.  The preparations for the grant for patient centricity innovations. And off course the never ending story of finding the money for PAE’s activities. Besides that there is always the representation task of PAE in order to get more visibility, more recognition and inn that way more influence.

However we are not complaining  because actually we are very pleased that PAE is doing so well and ask to participate in or join in other activities. We will try to do that as much as possible if the activity is aimed to improve the quality of life of chronic pain patients across Europe. We do keep a wide scoop on that as there are so many areas which can be improved so that the people we are doing this for will get a better life.

But PAE is more as the board only. It are also national associations which are very active on their own national level and trying their best to get the situation improved in their own country. It is good to read about that in this newsletter as well.

We can all learn from each other and see and discuss if some solutions could work in other countries. We should not wait till others come with these ideas. We are creative and skilled enough for ourselves to do so. If we as patient associations set the example that by cooperation one can achieve so much than the other stakeholders will join and work with us, because if we reach our goals it would benefit them in the end as well. It is a win-win situation for everyone.

Enjoy the reading and don’t forget we do appreciate new ideas.

 Joop van Griensven

President PAE

SIP Symposium 2017, 7-9 June, Malta

PAE News

SIP Symposium 7 – 9 June 2017, Valleta, Malta.

The SIP Symposium will be organised during the Maltese presidency on June 8 and 9. On the 7th of June there will be some pre symposium events such as a workshop on patient advocacy given by GAfPA (Global Alliance for Patient Access) and the closing activity of the Red Balloon project. The SIP Symposium will have 4 workshops on the 8th.

  1. European and national platforms addressing the societal impact of pain
  2. Pain and employment
  3. Pain as a quality indicator for health systems
  4. Existing challenges, models and best practices in pain policy

On the Evening of the 8th there will be the Award ceremony of the “EU civic prize on chronic pain”

On the 9th there will be the two plenary sessions to present the outcomes of the workshops and some keynote presentations on the mentioned topics. Speakers will be high level governmental representatives of  Malta, Italy and Spain and high level representatives of EU institutions.

Find more details on the SIP flyer 2017

 On Friday evening we will have the G.A. of PAE.

 It is important that the members of PAE will attend these workshops and plenary sessions. Don’t let them speak about is with out us.

 As the voice of patients is very important to be included we urge you to register for this event.  If you are a representative to participate in the PAE General Assembly you will benefit of that arrangement.

Registration can be done by following this link; https://www.sip-platform.eu/news/details/SIPRegistration.html

Register as soon as possible as rooms and places to attend are limited. Read more on the SIP symposium; https://www.sip-platform.eu/

There will be pre-symposium and evening activities which could be interesting for you to attend as well.  We do hope to see you all in Malta.

General Assembly Pain Alliance Europe (PAE)

PAE News

General  Assembly Pain Alliance Europe (PAE)

 

On June 9th, Friday evening,  PAE will organise its annual General Assembly in at the Grand Hotel Excelsior, Great Siege Road, Valletta, Malta.

All the necessary papers and other details will be send to you as soon as possible but still need some time to be processed according procedures. As usual 1 representative of each association will receive reimbursement for travel and accommodation.

PAE General  Assembly will be mentioned in the program of the SIP symposium. More on that further in this issue. However in order to be able to attend the General Assembly you do need to register for the SIP Symposium. You can do that by following this link; https://www.sip-platform.eu/news/details/SIPRegistration.html

This in order to guarantee a room for your representative. As rooms are limited they will be given in order of registration.

 

 

New PAE project

PAE News

Grant

Pain Alliance Europe will be leading a new project.  We will be organising the creation of a new grant for a project in which patients either have the lead or at least represent a significant involvement. Projects applying for this grant should be aimed at improving the quality of life.

The agreement providing the grant is currently in final negociation phase.

Thought to be a biennial grant, the project will reward every two years an organisation or a person for actions bringing something new, better or innovative in the domain of well being and life quality improvement. PAE will provide the secretarial work and will have the leading role in carrying out the project.

More news about this in the next newsletter… Stay tuned.

ICT 4 LIFE

PAE News

On the 19th January, Joop van Griensven, the president of Pain Alliance Europe, has participated at the headquarters of HOPE – European Hospital and Healthcare Federation, to an event introducing ICT4Life.

logoICTICT4Life is a project funded by the European Union’s Horizon 2020 Research and Innovation Programme, which brings together actors in the domain of research, innovation and IT development, together with non-profit organisations representing the elderly generation and hospital associations but also universities.

The project aims to  provide new services for integrated care employing user-friendly ICT tools, in order to help patients with Parkinson’s, Alzheimer’s and other dementias and their caregivers’ quality of life and autonomy at home.

20170119--President PAEat ICT4LIFE projectJoop van Griensven shares some after-event thoughts: “Such projects, although not specifically aimed to serve chronic pain patients, do have their undoubted value for this category, knowing that unfortunately chonic pain is related to almost all chronical diseases. Technical developments, adjustments to specific targets groups, including chronic pain, and this whole concept of integrated care in which partners with different level of inputs are working together to improve the delivery of health and social services, would definitely benefit the patients we represent.”

Under the agenda of the “ICT4Life approach and contribution to the challenges of integrated care” event, there there have been presentation and discussions about the approach of the organisations involved in the project on integrated care and chronic diseases, but also the technical approach, with a demo of the technologies developed during the first year of the project.

A video introduction of the ICT4Life laboratories, the perspective of patients, care-givers and professionals and how do ICT4Life technologies improve the condition of end-users? – were among the topics of this event.

If you would like to find out more about the next steps of the project ICT4Life , visit ICT4Life website and follow the project updates on Facebook, LinkedIn and Twitter.

 

Help us help you – PAE Survey on Chronic Pain

PAE News

Survey on Chronic Pain

A very exciting and useful project is now ready for your participation. PAE has created an internet survey which is available on the website of PAE.

We ask all our member organisations to feature the link for the survey that is in their language on their website.  (If you need advice on which one to use, ask info@pae-eu.eu.)  You can show links for two or more versions if you wish: we have created 16 versions in different European languages.

The power of this survey will increase according to how many answers we get. So we urge you to ask your members and all other chronic pain patients to click through and complete the survey in order to collect as much information as possible.

The results will be put through a careful analysis and we will publish them on our website. We will also provide our members with the relevant data which is in their language, so they can advocate for better options in their own countries. At the European level we will use these results to strengthen our lobbying activities.

If this survey proves successful, we have plans for other surveys on the various topics dealing with chronic pain such as work, insurance, etc.

The Red Balloon – Project updates

PAE News

#RELEASE THE PAIN

RedBlloon-logoThe Red Balloon project, started in May 2016, during the SIP in Brussels, will come to its end during SIP 2017 in Malta. With the help of our Maltese member and delegated members we are trying to organize an event which to generate lots of publicity for chronic pain.

As the first discussions are scheduled to take place during the second half of February, it is a bit difficult to give you any details about it at present. However, we will need your cooperation and ideas for generating publicity.

Let’s all try to conclude this project with as much “noise” as possible, showing our partners that we can generate publicity, that we can organize big events, that we can show the outside world that we can make a difference.  Most of all let’s show to our members that we are working to improve their situation. Right now, by generating publicity – and during the SIP event, by generating more support for our cause.

More details on this will be in the next newsletter.

Help us to achieve this!

Brain Mind and Pain – Project Updates

PAE news

The Written Declaration and next actions

 

In recent months, the vice-chairs of the Brain, Mind and Pain European Parliament interest Group, together which some co-initiators, have been working hard on Written Declaration 0112/2016 on access to employment for those affected by neurological disorders and chronic pain conditions.

Presented on 24 October 2016, they had until January 24th to get the signatures of half +1 of their MEP colleagues (that’s 376). Our members and their members also reached out to the national MEPs which was a big help.  However, we didn’t have the wind at our backs.  At that time, the discussion in the European Parliament about written declarations in general reached its climax and they voted to stop all written declarations.

Despite the negative attitude of MEPs towards written declarations, we achieved 178 signatures on our written declaration.

We would like to thank all the MEPs who signed the written declaration and all of those who did their best to get the written declaration accepted.

For EFNA and PAE this disappointment is no reason to stop with their activities.  It will encourage them to put some extra efforts towards achieving positive results. This will start with the next BMP meeting, scheduled for March 8, where we will discuss the Social Pillar with MEPs and representatives from the Commission, as well as options for patients to influence them. PAE will have an active role in this as we are convinced that our members and their members will benefit from a well-developed Social Pillar.