European Patients’ Forum AGM

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From April 10th-11th EPF held its annual AGM. Katharine Wheeler attended on behalf of LUPUS EUROPE.

Naturally, in the year of EPF’s campaign on Access to Healthcare, there was a strong focus on the #Access2030 campaign and putting healthcare firmly back on every politician’s agenda.

A noteworthy result of EPF’s survey on Access to healthcare is the fact that 60% of respondents experience financial hardship as a result of accessing healthcare. A result that won’t be a surprise to anyone affected by a chronic condition.

“I refuse to be considered a second-class citizen or a cost, my care is not a cost, it’s an investment.” – Marco Greco, EPF President

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For more on the #Access2030 campaign, please click here.

“2017 is a pivotal year – now that we have seats at the table, need to ensure enough patient advocates!” – Marco Greco, EPF president

Seven patient groups applied for EPF membership. BAG Selbsthilfe (German patient self-help group umbrella), the European Congenital Heart Disease Organisation, the Swedish National coalition (HSO Handikappförbunden, and the NCDP – Greek National confederation of Disabled people (not the official English name) were approved as full members. Due to a late application, the Spanish platform for patient organisations (Platforma de Organizaciones de Pacientes) was granted provisional membership.

AGORA (platform representing patient organizations of people with Rheumatic and Musculoskeletal Diseases (RMDs) in Southern Europe) and LuCE – Lung cancer Europe were approved as associate members.

Eight candidates put forward their applications as board members. Four positions were available. Marco Greco, Radu Ganescu and Stanimar Hasardjiev were re-elected while Hilkka Härkkäinen was newly elected. Robert Johnstone, a long-standing board member and well-known to many stood down. He was thanked warmly by the board and members for his years of service in patient advocacy. As someone whose comittment and good humour never wavered, he will no doubt be sorely missed.

A record number of Patient Organisations attended the AGM (the highest number yet), and many fruitful discussions were had on subjects such as Access, the complexity of research and clinical trials, the interest of data collection and volunteer recruitment – to name but a few. Work groups also discussed Access, Empowerment, Sustainable Patient Organisations and Governance.

“If each patient is a drop of water, together, we are the sea” – Marco Greco, EPF President

#Access2030 petition

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As part of the EPF #Access2030 campaign a petition has been created to ensure that decision-makers are aware of how important people feel healthcare is and that we want it to remain very firmly on the agenda.

To read more about the petition and to sign, please click here.

Andreas’ final story

Since his amazing feat Andreas has been busy recovering and getting back to normal life, but he hasn’t forgotten about his lupus supporters and has been working on his final article, telling us all about his fantastic achievement.

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Lupus New York Marathon Finisher – 06.11.2016

For Lupus Warriors, Lupus Heros, Lupus Scientists, Lupus Family, Lupus Friends, Lupus Supporters. It’s done. We did it. I still remember vividly when the campaign started back in April last year (2016). It seemed a long way and really it was, with many great moments and obstacles.  One thing is for sure, “Whatever the mind can conceive and believe, it can achieve” as Napoleon Hill once said.

Reflecting back on the objectives of the campaign to:

  1. Connect Lupus patients across Europe and
  2. Spread disease awareness

I believe there has was great collaboration in achieving them. The idea of dedicating a week of my training to each country member of Lupus Europe brought people who had never met before together, for one cause – to cheer up the guy who runs for Lupus. Also, I will never forget the voices of spectators during the marathon reading my t-shirt’s front message: “Running for Lupus” and the thousands of people who reached out through digital and social media.

After overcoming expected and unexpected difficulties, I decided to keep my mind sane throughout the run by dedicating each mile of the 26 to each country member of Lupus Europe as you can see on the back of my t-shirt. Below, I unfold the journey from beginning of the race towards the finish line.

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Starting line

It all began on Staten Island, in Fort Wadsworth, at the Verrazano Bridge. Right before the starter pistol’s shot, US anthem was played on a very loud speaker. On the silence of crowd I realized I was really doing it! Lot’s of thoughts passed by my mind and it got emotional. But immediately I emptied my head to save valuable energy I needed for the next 5 hours.

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1st mile- for Denmark

First mile is an uphill climb towards the middle of the Verrazano bridge, highest elevation point of the race. It was windy and the adrenaline at it’s highest. Great view in the distance to the left of the Manhattan skyline. I felt unstoppable and ready to take over the 5 boroughs of New York City.

2nd mile- for Estonia

After a long run uphill in the opening mile of the New York City Marathon, Mile 2 is a downhill joy ride that leads to Brooklyn. Here I experienced the first glimpse of spectators, a small number of them, high above on an overpass.

3rd mile- for Finland

Here the crowds were growing thicker and thicker. As the volume of spectators rose the noise and cheers increased too. Amazing initial feeling that put my attention in enjoying the moment and away from running.

4th mile- for Cyprus

As I was approaching the 4th mile I was looking around to find 2 special people who came to support me in this challenge. We made a plan to meet in every 4th mile. I will be running and they will be using the subway to get into the next meeting point. However, we didn’t agree on which side to look for them -left or right? We never thought the roads would be so packed and big. I chose the right side which gave me 50% chance to see them – running in the middle wouldn’t make sense because it was too far from the spectators.

5th mile- for France

As I was about to complete mile 4 I saw them on the right with all their supporting gear shouting my name. How can someone not feel emotional at that moment? I got so much energy after seeing my people, again I forgot I was running and started enjoying the moment and start thinking that soon I would be seeing them again. Currently, I was on Fourth Avenue for a lengthy 5km straight run.

6th mile- for Germany

I have to say I was enjoying the run more than I was expected. During the 6th mile I needed a break – a bio break (fancy way to say urinate). Good thing that along the course, toilets are located in every mile. We got strict instructions from the organizer who had the right to disqualify anyone who urinates anywhere except in the supplied toilets. I ended up spending around 5 minutes there because I had to queue.

7th mile- for Greece

One of the things I enjoyed the most during the run were the bands on stages built on the sidelines just for the marathon playing all sort of different music. In fact, 130 musical acts – an average of five per mile – were set to motivate us and entertain the millions of spectators. One of the songs I enjoyed the most was Y.M.C.A. by Village People. You should have seen us running and dancing at the same time in which we used the arms to spell out the four letters of the song’s title. It was great for 2 reasons – encouragement and opportunity to stretch.

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8th mile- for Hungary

I was very happy when I finished mile 7 because I knew that soon I would be seeing my people again- I just had to complete this mile. I have been seeing a lot of runners meeting with friends and family and I was also looking to that moment too. During this mile it was the first time I had some water. I thought it was about time to hydrate myself.

9th mile- for Italy

When I was entering mile 9 I was very excited for 2 reasons. First, my people should be somewhere there and second I would be running for Italy in this mile, one of the countries that gave me so much energy during my training. I owed them a lot. And here I identified my supporters 50 meters away and ran towards them. This time though, I stopped and hugged them. It was very important for me. The energy I got from that boosted me.

10th mile- for Netherlands

In mile 10 the path got narrower, on a one-way road, adding a sense of intimacy and the illusion of moving faster. It was a good time to check my pace, to start thinking about my time and how I was performing. Half-way my training I stopped using earbuds and just had the phone on loud speaker telling me the metrics – distance, duration, speed – and based on those I was adapting my run per kilometer. However, during this run there were 2 problems that didn’t allow me to follow my training tactics. First, I couldn’t hear my phone at all – it’s like it was not working. I was hoping it didn’t pause and miss all the analytics of the app. The crowd was so loud there was no way to hear it. Second, I had never run a marathon before and didn’t have any comparison on how well I was doing. All in all, I was running blind on performance following though my initial goal to enjoy the marathon.

11th mile- for Norway

Upon entering Mile 11, the crowd started to thin again. In the meantime, my stamina was knocking at the door. I realised I had still so long to go, but already had signs of running out of fuel. Perhaps the 2 pastries I had in the morning got burned already! But I was prepared. During the marathon EXPO few days ago, I bought 2 energy gels that I planned to use on mile 10 and mile 20. So I enjoyed my energy gel and got some water.

12th mile- for Belgium

As the energy gel started doing its job – getting absorbed into my bloodstream as glucose – I was enjoying the crowd and spectators who each had a story to tell with their bright colors or crazy hats, or flashy signs. It was funny and entertaining to see lots of signs criticizing the presidential elections which were to take place 2 days after. While all these thoughts were in my head I reached out to a kid who was holding a high five sign with the text: ‘Touch here for power’. It did energise me. Thank you. And that was the start of me giving high-fives – I probably touched more than 100 of the spectators after this.

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13th mile- for Portugal

After completing the 12th mile and as I was about to enter the 13th mile, I started looking on my right to find those 2 special fans that came to support me and make sure I keep sane! Through the whole mile I couldn’t find them. Lots of things went through my mind, had I passed by them already? Are they a bit farther from here? Did they not make it in time? Had they left because I was too slow and the time we agreed had already passed?

14th mile- for Slovakia

I completed mile 13 and I was sure I missed them so I started focusing on the race again. Either way, I was just entering the Pulaski Bridge, which connects Brooklyn and Queens and there are no spectators there. Exciting times, Brooklyn was about to be completed and new borough is on it’s way – just 3 boroughs to go: Queens, the Bronx and Manhattan. But that was not the only thing that powered me – a big milestone has been achieved – HALF MARATHON. I was so excited but worried at the same time. That’s the longest I had ever run during my training and everything so far looked normal. Because of injuries I was not able to complete my training. Ahead of me there were 13 miles of unchartered waters. I was optimistic.

15th mile- for Sweden

After running a nice and easy decline into Queens and meeting the crowd who welcomed us to their borough I started feeling a drop in temperature. Perhaps the sun was hidden behind the buildings or I was already using all my energy to keep me going rather than warming me up. I was not sure if that has been ever been proven scientifically but that was not the best time to focus my attention on it.

16th mile- for Spain

I started experiencing the emotional test of the marathon, but it was too early. It came at the most difficult location in the the race – from what I had been told. The 16th mile is considered as one of the most pivotal points of the marathon because it seems like an endless hill, there are no spectators and your legs start to ache. During my commute to the starting line I overheard other runners claiming many give up there. It was pretty clear what they were saying. I didn’t want to be one of them, but I did walk for a few meters. As the climb up completed and the descent began, I was more confident than ever. I was almost there, getting into Manhattan. Good bye Queens.

17th mile- for Switzerland

I have to admit the spectators here were absolutely amazing. I already had 17 miles in my legs but the welcome we received in Manhattan made me forget all the challenges – mental and physical. I was looking for my biggest fans but my hopes were in vain that time, it was clear we hadn’t planned appropriately. All I was focusing on at this point was enjoying Manhattan.

18th mile- for United Kingdom

And here we are, just a single digit away from passing by the finishing line, packed with spectators on the sidewalks of the Upper East Side. The only thing that kept me going at this point were two things. First, the reminders of all the support messages I had got during the campaign from all of Lupus Europe’s member countries and second the push from the loud noise of the fans. One thing I remember vividly was a lady spectator I made eye contact with, who was shouting the text on my t-shirt – Running for Lupus. To be fair many did exactly that, but this time was different. This time, I realised the importance of completing the marathon and the impact this gesture can bring to people who are living with the disease. Thank you random lady, thank you for pushing me.

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19th mile- for Iceland

Another difficult mile, I was a wreck. At that time, I was wondering how my lupus would react. I had experienced some symptoms during my training but then I had time to rest and recover.  I was thinking I might upset my lupus and get a bad reaction, but I was hoping that would happen after the race, after I had finished, after I had proven to lupus that it had already been well and truly kicked.

20th mile- for Ireland

At the end of this last mile, I said goodbye to Manhattan for a short while – just a mile and something – to take over the last borough of New York City – The Bronx. I found this borough interesting because of the many turns that kept my mind busy, but also because the crowd was different, more hipster style. Despite all these, my energy levels hit a low again and it was time for my second and last energy gel.

21st mile- for Israel

Another interesting thing that happened in this borough was the spectators willingness to give treats to the marathoners. So many of them offering all sorts of muffins, croissants, sweet dumplings etc. I couldn’t resist, even though I don’t remember the last time I had a sweet. So, as I was running towards a nice lady who was offering tasteful treats and as soon as I raised my hand to grab one of those delicious muffins, a guy hit me from behind. Obviously my mistake. I thought the world was mine and I didn’t even look behind me! The result was to miss that treat, but luckily few meters farther there was another person offering sweets! Of course I had some. Perhaps the most enjoyable treat I had in my life. I was so hungry.

22nd mile- for Romania

In mile 22 I was entering Manhattan again. I realised I had five miles to go – I couldn’t believe it.  The crowds must have been more on the streets more than 3 hours supporting us by now. Hats off to them. That dose of support can lift the spirits of any marathoners whose bodies are beginning to cry, “Enough!”. Interestingly, my lupus hadn’t even knocked on my door so far. It must have been enjoying the nice race too!

23rd mile- for Lithuania

During this long run on 5th avenue I started feeling a bit cold. This may sound strange since I had been running for so long. Again my sugar levels hit rock bottom. I was desperately looking for energy. The Organizers didn’t disappoint me. A great source of quick-acting carbohydrates was served at the water stations – Bananas.

24th mile- for Slovenia

Funny thing this marathon. We try to do everything right – the long runs, the speed workouts, the stretching – yet nothing fully prepares us for the physical punishment and emotional test of raceday. 5 km to go and my muscles were screaming. Not only that, this mile is almost entirely uphill. One thing is in mind though, where the heck are my 2 fans, the last time I saw them was 16 miles ago. I hoped they would manage to be at the finish line. But I had another 30 minutes to go. Would they be worried?

25th mile – Lupus patients all over the world

The most sought for time came to be. I entered Central Park. To be honest I couldn’t believe it. I was so tired, I had so much pain in my gastrocnemius. I walked for 20 meters. But I had more pain in my muscles when walking so I started running again, very slowly. This mile was dedicated to all the 5million lupus patients around the world. I couldn’t disappoint them. I was almost there. But this mile looked like a never ending one. I was screaming inside.

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26th mile & 385 yards – Friends, Family and supporters of Lupus

Another mile and something to go. Still endless, still no energy, still pain. But screaming crowds gave me that extra energy to keep going. I thought the last mile would be the easiest because of the enthusiasm and adrenaline. But no. the first km of the last mile was a nightmare. But as I was fighting to keep running I saw the finish line, maybe 200 meters away and I was rejuvenated. I start running so fast, maybe the fastest pace I had during the whole run. I was so happy. I was in heaven. And there, FINISH LINE.

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Αcknowledgments

Katharine – always there every week to review and publish my articles

Lupus Europe Trustees – who encouraged me, gave me courage, and on top of all that, opened their hearts

Alain – who supported my initial idea to partner and become an advocate of Lupus Europe

Lupus Europe Members – for supporting me every week during my training, for publishing articles, sharing their stories and allowing me to wear their flag. I couldn’t have made it without them for sure

Lupus Cyprus – my home country members never stopped supporting me, from day one of my diagnosis until today

Family and friends – you are the best

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Next in the line we have a new Hero running for Lupus – check Marisa Costa https://lupus-europe-blog.org/2017/02/23/meet-marisa-from-portugal/

 

 

OECD forum on the “Future of Health”

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On Jan 20th, in Paris, the Organization for Economic Co-operation and Development (OECD) held a Forum on the Future of Health, with the tag line of “People at the Center”.  The Organization provides a setting where governments can compare policy experiences, seek answers to common problems, identify good practice and coordinate domestic and international policies.  Generally, the OECD is associated with business, trade unions, developing economies, so it was a very pleasant surprise to see the huge commitment the OECD made to patients and world health with this Forum.

“Over 500 participants representing civil society, patients, providers, policy makers, academics and industry came together to discuss key issues including: Harnessing digital technology and data to create proactive, people-centred systems; Caring for people with complex needs; The importance of measuring what matters to people and to patients.”

The speakers were from all around the globe, including health ministers, economists, …, and a few patient representatives.   It was a two-day meeting: the first day open to patient representatives.

Thanks to an invitation issued during an EPF conference on Patient Safety, LUPUS EUROPE was able to attend and was represented by Anne Charlet who went to listen and to learn, to meet and to tweet! Here is her report – previously published in our recent newsletter:

AnneIt was a full day of very high quality presentations and relevant questions and answer sessions.

My first impression was one of surprise as I slowly realized that absolutely every single talk had a patient-centric message:  Ask the patient, involve the patient, get patient reported outcomes, “doctors have to get off their pedestals and patients off their knees”!

The presentation that impressed me most was by Michael Porter, an economist and professor at the Harvard Business School.  He is not in favor of an incremental approach to developing and using patient reported indicators.  “The only definition of a successful health system is one that produces value for patients. We must establish global standard sets of outcomes, condition by condition. There is no excuse for inaction,” he said.

His economist’s approach, quantifying something that we often view as only qualitative, was fascinating.  He is a founder of the ICHOM project, which has as a goal to standardize outcome measures for key medical conditions, and thereby being able to truly show “success rates”.  I learned at this forum that they are just starting work on their first auto-immune disorder: Rheumatoid Arthritis.  For the moment, lupus is not in their plans, and as they are a non-profit organization and accept no funding from industry, they need to have a project funded first before they start work.  Something for the future?

There were many more excellent presentations.  The few patient representatives that were present seemed to be doing a lot of the tweeting, including myself: if you search on #Futureofhealth, you can read the tweets that went out over those days.

And to read a very good account of the day, look at Tessa Richards: Power to the people—via Paris Tessa Richards, British Medical Journal, blog entry here: http://blogs.bmj.com/bmj/2017/01/20/tessa-richards-power-to-the-people-via-paris/

ERN meeting, Vilnius

Kirsten represents LUPUS EUROPE at ERN meeting in Vilnius

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A chance to meet up – Aiste, Aldevina and Ingrida from the Lithuanian Lupus group with Kirsten

For tweets and pictures from the event, visit LUPUS EUROPE’s twitter page.

From our recent newsflash:  On March 9th EU President of the European Commission, Jean-Claude Juncker, opened the third meeting and Kick-off of the European Reference Networks (ERNs) taking place in Vilnius, Lithuania.
Please see the short video presenting the concept of ERNs here .
European reference networks (ERNs) help professionals and centres of expertise in different countries to share knowledge. ERNs should:
– apply EU criteria to tackle rare diseases requiring specialised care
– serve as research and knowledge centres treating patients from other EU countries
– ensure the availability of treatment facilities where necessary
24 ERNs have been established, with LUPUS EUROPE the patient representative in the ReCONNet on rare and complex rheumatic diseases, along with, among others, Scleroderma and EURORDIS’ EPAG. For more information , please contact Kirsten.

For tweets and pictures from the event, visit LUPUS EUROPE’s twitter page.

#Access2030

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Monday 27th saw the official launch of EPF’s campaign on Access to Healthcare at the European Parliament. LUPUS EUROPE has been involved in the Working group for this project and the working group met on Tuesday to discuss Monday’s meeting and the next steps and the work which remains ahead. There is still a lot of work to do on this very important subject.

Photos from the kick off meeting at the parliament are visible on EPF’s facebook page here.

The following article is copied from EPF’s web page on the campaign.

Campaign on Access to Healthcare

From January 2017, EPF carries a flagship campaign on Access to Healthcare. This theme is a long standing priority for EPF and its membership, and is at the heart of the vision of the organisation.

Under the tagline ‘Universal Health Coverage For All’, the campaign is an opportunity to raise awareness about the barriers patients face in accessing healthcare, and to build on current political momentum – including the UN Sustainable Development Goals for health – to foster more EU cooperation on access to healthcare.

The EPF Working Group on Access drafted the following overarching strategic objective for the campaign:

The EPF Access campaign will contribute to make universal access a reality for EU patients by 2030, through defining and promoting concrete actions, in concert with the health community, to which decision makers need to commit, to ensure we achieve the Health SDGs by 2030.”

EPF has used use its prior work on access to shape the messages of the campaign; in particular looking at the definition of access to healthcare, and the statement on pricing and reimbursement of innovative medicines.

Practical info

The one-year campaign will be officially launched on 27 February at the European Parliament, in Brussels. The event – co-hosted by MEP Kateřina Konečná (GUE/NGL, Czech Republic) and MEP Andrey Kovatchev (EPP, Bulgaria) – will be an opportunity to present the campaign and to discuss what actions should be taken to achieve Universal Health Coverage at European level.

Rationale – Why a campaign on access?

Disparities in access to healthcare predate the financial crisis in Europe, but against a background of austerity measures and falling healthcare spending in many Member States since 2009, inequalities have been made worse. Access to care is affected by austerity policies in response to the economic crisis, such as cuts in healthcare budgets and in insurance coverage, increased fees and co-payments, and cuts in social protection measures.

At the same time, healthcare systems are facing increasing demands as a result of demographic change. As the population ages, the number of patients with chronic diseases is growing. Patients who developed a chronic disease at a younger age are also living longer, thanks to modern medical treatments. Patients with chronic diseases develop specific needs which the healthcare systems need to adapt to.

Patients across the EU are reporting multiple barriers to access to healthcare, whether it’s not available, not adapted to needs, or not affordable. EU Member States need to overturn the current trends of short sighted decisions on investment in healthcare, and commit to realising universal access by 2030 by taking concrete steps. EU Member States need to achieve universal health coverage and improve access to healthcare by 2030 according to the UN Sustainable Development Goals.

Contact

If you have questions about the campaign, don’t hesitate to contact us!

  • For policy-related content:

Katie Gallagher – Policy Adviser

  • For dissemination/communication activities & material:

Laurent Louette – EPF Communications Officer

Sara Gayarre – EPF Communications Assistant

 

 

Meet Marisa from Portugal!

Marisa Costa has lupus and is currently planning to run a marathon in Aarhus, Denmark August 6 this year! She needs all the help she can get and has created a crowdfunding page (see link beneath). Please help by sharing her story and showing her your full support 👍

“I am Marisa Costa from Portugal. I intend to participate in the European Masters Athletics that will be held, this year, in Aarhus.

To get funding I have a crowdfunding page: https://ppl.com.pt/en/causas/campeonato-dinamarca

And I also have an athlete facebook page where I publish my accomplishments: https://www.facebook.com/MarisaCostaAtleta/

I hope I can count with your help to spread the word 🙂

Having Lupus changed my life. I want to tell my story and I want to be an example to others.”

 

NEW – LUPUS EUROPE “catch-up”

 

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At the beginning of this year, LUPUS EUROPE launched a new initiative, called “LUPUS EUROPE catch-up”. The aim is to better keep in touch with our member groups throughout the year.

The first member group we spoke to was Norway. Katharine Wheeler spoke to Kari Ødegård about the challenges and difficulties they face and about what they hope the future will bring.

Norway is a geographically difficult country, with lupus a small disease group. This makes it very difficult for members to stay in touch well and to meet up.

Some of the challenges they face include the lack of volunteers – a theme common to most member groups – and improving communication.

They are very enthusiastic about LUPUS EUROPE’s youth initiative and they hope that one day they can set up a youth group in Norway. They have also spread the word about the Kick Lupus campaign through instagram and are working on setting up a new, active Facebook page to better invigorate their group and its members.

You can get in touch with Kari at Lupus Norway with the following contact details:

Lupusgrupper i NRF

International contact :

Kari Ødegård

+47 913 291 81

Association address:

Steinhagen 55A
4100 Jorpeland
Norway

Tel.: +47 233 490 81
Email: lupus@revmatiker.org

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Next, it was Portugal’s turn for a “LUPUS EUROPE catch-up”. Katharine spoke to Rita  Mendes and Inês Ribeiro.

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This week the Portuguese Lupus group will be attending EULAR PARE – along with Sara Badreh from the board – so we chatted about what to expect and exchanged contact details for those attending.

Similar to the Norwegian group, the Portuguese group’s difficulties lie with funding and volunteers, especially volunteers with specific skills.

On the call Rita and Ines shared their hopes and thoughts, including some great ideas to move forwards together in the future. We will be looking into some of these in the very near future!

They are looking forward to being able to share their experiences and projects with other groups, both via the blog and the convention later in the year. We will be hearing more about one of those projects very soon – watch this space!

They are also very excited to have their very own lupus athlete and runner, Marisa, who is hoping to go to the European Masters Athletics to be held in Aarhus, Denmark in July. We will be sharing more of her story later on.

You can get in touch with the Portugese lupus group with the following details:

Associação de Doentes com Lupus
Maria Altiva Paula

Tel.: +35 121 330 36 40
Email: altivap@gmail.com

An auto-immune perspective on EPF’s blog

In the context of EPF’s recent multi-stakeholder conference on Patient Safety, Katharine was asked to tell her story as an example of patient safety in a chronic disease setting. You can read about it on EPF’s blog.

http://www.eu-patient.org/blog/?p=632#more-632

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Introducing Sara

Better late than never… it is time to introduce our newest board member, Sara Badreh. Sara was elected to the board at our convention in Würzburg. We are delighted to have her on board and we’re sure that she will be a huge asset to our team. As you can see from her photo, Sara has a great sense of fun and is a lovely bubbly person to work with.

 

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“I am now 31 years old, meaning I have lived with SLE for half my life. I was diagnosed as a 16-year-old girl and from that moment on my life changed. I knew that one day, when I had this disease under control, I would dedicate my life to helping others in the same situation and contribute to how research, medical strategies, patient care and awareness of Lupus evolve in the future.

After a master’s degree in Molecular Life Sciences I am currently working at the Center for Molecular Medicine (CMM) at the Karolinska in Stockholm where I study the proteins involved in different singling mechanisms. I am also interested in starting and pursuing a PhD within the field of Rheumatology. Besides research I am also currently a board member of the Swedish Rheumatic Association at a district level, as well as at a regional level for Stockholm. What’s more, I am now a Lupus Europe Trustee and board member. 

Working with those organisations, as well as being involved at a research level, gives me the unusual opportunity of having one foot in both worlds. I can push research by having a voice in the field as well as I listening to the patients and catering to their needs.
I want to be as involved as much I possibly can, at every level. This is what I want to dedicate my life to. Making patients’ lives better and inspiring others with Lupus, while showing that you can do and become anything you want.”

Kicking Lupus in 2017

Let’s Kick Lupus together in 2017

LUPUS EUROPE would like to extend warm wishes to all its members, partners and supporters. We hope that you all have a wonderful festive season and that the New Year is full of promise and fulfillment.

2016 has been a busy year for us, promising exciting times ahead. We are delighted to have had several abstracts presented at important Lupus events and to be involved in several new initiatives where the patient organisation takes on its role as a more equal partner in the healthcare field.

For 2017, our wish is that we all start to KICK LUPUS together! So much remains to be done towards our vision of a life without lupus… and yet there is so much we can do if each of us kicks lupus every day:

Kick Lupus is kicking yourself into shape by increasing your physical activity: it is proven to help reduce tiredness and pain over time and every little helps.

Kick Lupus is raising the patient voice and increasing our skills for better participation in research and inclusion of Patient Reported outcomes.

Kick Lupus is starting a better life by adhering to treatment, and working with the medical community for broader implementation of Standards of Care.

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Kick lupus is kicking ideas around: How can we better meet the needs of young people with lupus? How can we strengthen patient/doctor communication? How can we be active in the workplace?

Kick Lupus is raising awareness and support by volunteering in your local group, participating in events, or helping make a great World Lupus Day.

Kick Lupus is strengthening the links between LUPUS EUROPE, its members, and everyone living with lupus around Europe.

There are so many way we can all KICK LUPUS… Let’s get started! BEST WISHES FOR 2017 from all of us here on the LUPUS EUROPE board and secretariat.

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LUPUS EUROPE, convention 2016, in Würzburg, Germany

December board meeting

The LUPUS EUROPE board met in Milan for a fruitful week-end of meetings from 9-11th of December.

Several topics were on the agenda, including the very first preparations for the 2017 convention and mapping out the very busy 2017 calendar of events and work sessions. As well as the board (minus the wonderful Anne who was unfortunately unable to attend), Augusta Canzona, Lucia Di Bernado and Daniela Rava from Lupus Italy were on hand to help out with convention details.

From left to right, Augusta Canzona, Kirsi Myllys, Kirsten Lerstrom, Alain Cornet, Katharine Wheeler, Lucia Di Bernardo, Sara Badreh and Jeanette Andersen (front).

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Swedish Lupus group 2016 convention report

The Swedish Lupus group have sent us their report of the LUPUS EUROPE convention in Würzburg. It’s in Swedish – of course – but we thought it would be nice to share with you!

Have you made a convention report for your group’s newsletter or magazine? If so we’d love to share it here too 🙂

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For a PDF version of the report swedish-convention-report

European Parliament Interest group…

Today, Tuesday, December 6th Chair Kirsten Lerstrøm, LUPUS EUROPE, was invited to address the European Parliament Interest Group on Rheumatic and Muscoskeletal Diseases (RMDs) on Patients’ Perspectives on Improving Access to Care and Therapies for People with Rare RMDs at the meeting of “Policy Issues and Challenges in the Treatment and Care of Rare Diseases”.

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