Hello again – now a note about day 2 at the IAPO GPC 2016!
(International Alliance of Patients Organisations) Global Patients Conference 2016)
Sunday morning was devoted to UHC (Universal Health Coverage).  We had two presenters, from the WHO (World Health Organisation), Nittita Prasopa-Plaizier and Mario Ottigilo.    UHC is a global project with the goals :
  • health service coverage;
  • financial risk protection; and 
  • equity or coverage for the entire population.
I believe it was launched in 2008, and has an objective of being implemented by 2030!
You can learn more about it here: http://www.who.int/mediacentre/factsheets/fs395/en/
Nittita Prasopa-Plaizier, WHO, said there was a role for patient organisations in the UHC.  The role of ensuring that people understand their own health care system.  She also talked a lot about putting “the care back into health care” and beginning with the people.  She felt compassion is needed on both sides: Patients prepared, and Doctors attentive. As “Compassionate Care” in UK.
She said that the WHO does not work with patient organisations, but that was where IAPO came in.  IAPO is the go-between for WHO and organisations. 
Mario Ottigilo, WHO, talked about the roles of pharmaceutical companies and the private sector in health care.  There is a place for partnerships with private and pharmas for UHC.  Private companies can support  the UHC through training of healthcare professionals, capacity-building, and awareness campaigns.
Kawaldip Sehmi (IAPOvoice CEO) told us about his grandmother, who was known for tolerating someone until the next wedding party, when she would seek her very public revenge!  He told us to, “Speak up! You have the ability to embarrass the government at the wedding.  Embarrass them into listening to us!” 
Then there was a panel on the different approaches to innovation to health care.
Robert Johnstone, IAPO board member (and now an EPF board member), presented a patient’s view of the NHS (National Health Service in the UK). He talked about the great affection people have for the NHS in the UK, “we love it, especially interaction with doctors”.  NHS is a health system where care and medicine are free at delivery,  but Robert Johnstone said that too little money and effort, only 4% of the budget, is spent on prevention.  He continued, “”The NHS has become a fear-based system whereby ‘we have to treat you, just in case’ .”
Joshua Wamboga, Uganda Network of AIDS Service Organisations, talked about how Rwanda brought global health care just years after genocide.  
We then had two breakout sessions. 
For the first one, I attended the session, “Patient involvement in research: innovation in the drug development and access pathway”, chaired by Antonio Ciaglio, IAPO.
Antonio said in his opening words that patients need to be at the center of research and involved from the start.
Alison Lightbourne, IAPO, says that no matter what everyone says about patients being involved in research, patients are still at the “kids” table.  It will take work to get to more acceptance and involvement of patients.  We all want better drugs coming to market, so we have to work on ensuring that.  There are two projects at the moment that should help that, from IMI: Protect Project and the GetReal Project.
The Protect Project, The goal of PROTECT is to strengthen the monitoring of the benefit-risk of medicines in Europe, using new tools and methods that are profoundly patient-centric. http://www.imi-protect.eu/objectives.shtml
The GetReal Project, aims to show how robust new methods of RWE collection and synthesis could be adopted earlier in pharmaceutical R&D and the healthcare decision making process. Aim is to try and get “real world” info from patients in order to best tackle challenges.   https://www.imi-getreal.eu
IAPO believes that patients have unique needs, and they want to understand what matters to patients most. 
Jane Meijlink International Painful Bladder association, gave such an eye-opening presentation on the role patients can have in standardising terminology and definitions.  “Healthcare is a chain with multiple links and standardisation of terminology and definitions can have an impact on every link in the chain and therefore a major impact on the patients, the patient’s healthcare and ultimately the patient’s whole family.” 
Ricardo C Santiago, Health Insight in Brazil, gave a really fascinating presentation about a maternal health project, EUSAUDE, that includes health analysis. What is really special about this program, is they collect all the data and provide it to do valuable Maternal health analysis in Brazil, which has had an positive impact on maternal health are in Brazil.
–> Dr Santiago is a very good person to follow and to talk to about health data collection and data ownership, which was a recurring topic at this conference.
Kate Hallet of Quintiles, outlined their work.  She said she has been passionate about her work since started working on patient-centric trials in 2005 with lupus Europe! 
She said that Quintiles is creating an easy to search on platform for patients to find clinical trials.  It’s not live yet, but is supposed to be going live soon.  It provoked quite a bit of interest as the www.cinicaltrials.gov website is hard to decipher for a normal person.
There were comments and questions about two projects that IAPO is involved in: IMI, Innovative Medical Initiative (“Europe’s largest Public/private initiative”), aiming to speed up the time to market for new drugs; and PFMD, Patient Focused Development Coalition, which was launched Oct 2015. 
There was a comment that any patient going into the clinical research and/or trials has a very steep learning curve!  And it’s been that way for at least 25 years.  However, the GetReal project and Eupati should help.
Another comment was about the ownership of data being really one of the very key issues that should be addressed very quickly, we are already behind!  There is hope about sharing data and doing data analysis to be had from Big Data technology but we are far from the objective.
The second breakout session was small group networking, and the topic was defined by the attendees.  Our group ended up being the largest, on, “How do we create and sustain strong and capable patients’ organisations;”
After much discussion, the three point plan to ensure a healthy organisation was: 
  1. Have a clear strategic plan, which includes
    1. Shared vision
    2. Shared values
    3. Succession plan, (and make sure you transfer the knowledge! “As soon as you know something, share it with someone in the group.”)
  2. Human Resource (volunteers) Management is essential, with 
    1. Clear, ethical rules
    2. Recognition (say thanks)
  3. Communication
    1. Of strategic plan and vision
We also told IAPO and EPF that we need training and help, and perhaps they can develop a course.   That’s when Camille Bullot of the EPF told us about the upcoming training on “Transparency & Ethics”, and another one: 2016 EPF Regional Advocay Seminar: “Getting the patients’ message across to the national and European levels”.  Have a look here: http://www.eu-patient.eu/Events/
The final plenary concerned different approaches to patient involvement and access.
Penney Cowen, American Chronic Pain Association, showed us the new pain scales they have created and are trying to get accepted by all hospitals in the US. IN fact they have created many different tools for pain and other medical situations. Such good work, and so obvious it seemed strange that their scales hadn’t already been adopted!  https://theacpa.org/Communication-Tools
Victoria Pinkney- Atikinson, Patient Health Alliance of Non governmental Organisations, gave  a very inspiring speech about work that is being done in South Africa.  Very much of a “think global, act local” advocate, and a woman who believes we need to speak up, shout out, about what patients need.  “We patients are too moderate. We need to get active! To unzip our mouths!”  And “Patient groups need to be Watchdogs, not Lapdogs! ” 
Sylvie St-Laurent, Pfizer, spoke about the RA specific platforms.  Apparently they are really looking at involving patients pre-clinical trials and are actively training patients. 
We had the group photo and then the gala dinner for the end of day 2!

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2 days ago

🏋️‍♀️🩺 In a previous post, we discussed the significant benefits of physical activity (PA) for individuals living with lupus.

🤓 Today, let's delve deeper into the importance of PA and its relationship with this autoimmune disease.

The World Health Organization (WHO) defines physical activity as any bodily movement that requires energy expenditure, encompassing more than just sports – it includes daily activities like walking🚶‍♂️or cycling 🚴‍♀️ to work 🏢 and opting for stairs over elevators.

📝 The WHO has established specific recommendations for the amount of PA needed for each age group, that we have included in the images for your information.

❌ However, according to a study led by Blaess J, Arnaud L et al., 𝗼𝗻𝗹𝘆 11% 𝘁𝗼 29.8% 𝗼𝗳 𝗽𝗮𝘁𝗶𝗲𝗻𝘁𝘀 𝘄𝗶𝘁𝗵 𝗹𝘂𝗽𝘂𝘀 𝗺𝗲𝗲𝘁 𝘁𝗵𝗲𝘀𝗲 𝗿𝗲𝗰𝗼𝗺𝗺𝗲𝗻𝗱𝗲𝗱 𝗹𝗲𝘃𝗲𝗹𝘀 😲.

Remarkably, the same study revealed that aerobic programs had notable benefits in individuals with lupus :

⬆️ Global aerobic capacity.
⬇️ Cardiovascular risk.

While resistance training programs:

⬆️ Enhanced strength and overall function.

✅ Additionally, participants experienced:

⬇️ Fatigue.
⬇️ Depression.
⬆️ Health-related quality of life following PA training

✅ Both aerobic and resistance training programs were well tolerated in SLE patients with stable disease and no severe adverse events were reported in the study. 💪😊

Despite the obstacles that lupus patients may face, such as pain, fatigue, and mental health issues, there's great news on the horizon. Lupus Europe, through the #kicklupus challenge, is dedicated to overcoming these hurdles with a tailored exercise program designed to accommodate those with mobility limitations. You can join for free, from the comfort of your home, at your preferred time, and the best part – no equipment is required!

🌟🙌 Let's embark on this journey together towards better health and well-being.

For more information, follow the link below and don't forget to share your progress and motivate each other with the hashtag #kicklupus. 📷💪

Let's kick lupus together! 👊🦋

www.lupus-europe.org/me-lupus/
... See MoreSee Less

🏋️‍♀️🩺 In a previous post, we discussed the significant benefits of physical activity (PA) for individuals living with lupus.

🤓 Today, lets delve deeper into the importance of PA and its relationship with this autoimmune disease.

The World Health Organization (WHO) defines physical activity as any bodily movement that requires energy expenditure, encompassing more than just sports – it includes daily activities like walking🚶‍♂️or cycling 🚴‍♀️ to work 🏢 and opting for stairs over elevators.

📝 The WHO has established specific recommendations for the amount of PA needed for each age group, that we have included in the images for your information.

❌ However, according to a study led by Blaess J, Arnaud L et al., 𝗼𝗻𝗹𝘆 11% 𝘁𝗼 29.8% 𝗼𝗳 𝗽𝗮𝘁𝗶𝗲𝗻𝘁𝘀 𝘄𝗶𝘁𝗵 𝗹𝘂𝗽𝘂𝘀 𝗺𝗲𝗲𝘁 𝘁𝗵𝗲𝘀𝗲 𝗿𝗲𝗰𝗼𝗺𝗺𝗲𝗻𝗱𝗲𝗱 𝗹𝗲𝘃𝗲𝗹𝘀 😲.

Remarkably, the same study revealed that aerobic programs had notable benefits in individuals with lupus :

⬆️ Global aerobic capacity.
⬇️ Cardiovascular risk.

While resistance training programs:

⬆️ Enhanced strength and overall function.

✅ Additionally, participants experienced:

⬇️ Fatigue.
⬇️ Depression.
⬆️ Health-related quality of life following PA training

✅ Both aerobic and resistance training programs were well tolerated in SLE patients with stable disease and no severe adverse events were reported in the study. 💪😊

Despite the obstacles that lupus patients may face, such as pain, fatigue, and mental health issues, theres great news on the horizon. Lupus Europe, through the #KickLupus challenge, is dedicated to overcoming these hurdles with a tailored exercise program designed to accommodate those with mobility limitations. You can join for free, from the comfort of your home, at your preferred time, and the best part – no equipment is required!

🌟🙌 Lets embark on this journey together towards better health and well-being.

For more information, follow the link below and dont forget to share your progress and motivate each other with the hashtag #KickLupus. 📷💪

Lets kick lupus together! 👊🦋

https://www.lupus-europe.org/me-lupus/Image attachmentImage attachment+3Image attachment
5 days ago

🎥 What makes #LupusGPT different? Watch this video to find out!

🌟 Unlike other AI tools, #𝗟𝘂𝗽𝘂𝘀𝗚𝗣𝗧 𝗴𝘂𝗮𝗿𝗮𝗻𝘁𝗲𝗲𝘀 𝗮𝗰𝗰𝘂𝗿𝗮𝗰𝘆 𝗮𝗻𝗱 𝘁𝗿𝗮𝗻𝘀𝗽𝗮𝗿𝗲𝗻𝗰𝘆. Here’s how:

✅ Every response is based on a 𝗿𝗶𝗴𝗼𝗿𝗼𝘂𝘀𝗹𝘆 𝗰𝘂𝗿𝗮𝘁𝗲𝗱 𝗿𝗲𝗽𝗼𝘀𝗶𝘁𝗼𝗿𝘆 𝗼𝗳 𝘀𝗰𝗶𝗲𝗻𝘁𝗶𝗳𝗶𝗰 𝗱𝗼𝗰𝘂𝗺𝗲𝗻𝘁𝘀, including the latest EULAR recommendations and the #Lupus100 website.

#𝗟𝘂𝗽𝘂𝘀𝗚𝗣𝗧 𝘄𝗶𝗹𝗹 not 𝗺𝗮𝗸𝗲 𝘂𝗽 𝗮𝗻𝘀𝘄𝗲𝗿s. If the information isn’t available in its database, it will honestly let you know.

🔍 Our database is regularly updated with verified information to expand its knowledge and utility.

🤖 Challenge #LupusGPT with your toughest lupus questions and experience its precision and accuracy, and let us know your thoughts. Your feedback is very valuable to us!

Visit now s.mtrbio.com/rftoeqgutq and get 🤯 by this amazing tool.

And remember! Although #LupusGPT is designed to provide valid information and be a valuable resource, 𝗻𝗼 𝘁𝗼𝗼𝗹 𝗰𝗮𝗻 𝗿𝗲𝗽𝗹𝗮𝗰𝗲 𝘆𝗼𝘂𝗿 𝗽𝗵𝘆𝘀𝗶𝗰𝗶𝗮𝗻.
... See MoreSee Less

1 week ago

👋 Welcome February!

We hope you all are ready for action! 💪

🎯 One of our goals is to help you #kicklupus, and we are going to do it together! 😃

👉 If you...

Have lupus
Love someone with lupus
Or treat someone with lupus...

... stay tuned! 🙌

This month, we are focusing on a powerful tool that can make a difference in lupus: EXERCISE!💪

📸 Whether it's a gentle stroll, a 🧘‍♀️session, or any other activity, let's motivate each other by sharing pictures of our workouts with #kicklupus
... See MoreSee Less

👋 Welcome February!

We hope you all are ready for action! 💪

🎯 One of our goals is to help you #KickLupus, and we are going to do it together! 😃

👉 If you...

Have lupus
Love someone with lupus
Or treat someone with lupus...

... stay tuned! 🙌

This month, we are focusing on a powerful tool that can make a difference in lupus: EXERCISE!💪

📸 Whether its a gentle stroll, a 🧘‍♀️session, or any other activity, lets motivate each other by sharing pictures of our workouts with #KickLupusImage attachmentImage attachment
1 week ago

🙌 January is coming to an end!

🛣️ Throughout this first month of the year, we've discussed how to #kicklupus with the power of a balanced diet.

🥗 In a recent post, we highlighted that the Mediterranean diet stands out as the only one scientifically proven to be beneficial for lupus.

📚 This week, we're diving deep into the groundbreaking study conducted by Gabriela Pocovi-Gerardino and colleagues, published in the Rheumatology journal in 2021, that demonstrates that the Mediterranean diet has a positive impact on lupus activity, cumulative damage, and cardiovascular risk.

🔴 The results of this study indicate that patients with higher adherence to the Mediterranean diet exhibited improved:

✅ Improved anthropometric profiles (body mass index, percentage of fat)

✅ Better levels of cardiovascular risk markers in the blood

✅ Enhanced levels of certain inflammatory biomarkers (including C-reactive protein, homocysteine, triglycerides, and albumin).

🔵 Another noteworthy conclusion from this study is that the consumption of specific components of the Mediterranean diet (olive oil, fruits, vegetables, sofrito, legumes, fish, and nuts), along with the avoidance of red meats and industrial products rich in sugars, is associated with a 𝗹𝗼𝘄𝗲𝗿 𝗹𝗲𝘃𝗲𝗹 𝗼𝗳 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗮𝗰𝘁𝗶𝘃𝗶𝘁𝘆 𝗺𝗲𝗮𝘀𝘂𝗿𝗲𝗱 𝗯𝘆 𝘁𝗵𝗲 𝗦𝗟𝗘𝗗𝗔𝗜 𝗶𝗻𝗱𝗲𝘅.

🦋 It is crucial to emphasise that achieving a SLEDAI score of zero is one of the requirements for lupus remission, as per the recent definition by the DORIS group.

🟣 Despite the study's limitations, the authors conclude that increased adherence to the Mediterranean diet has a positive impact on:

✅ Lupus activity.
✅ Cumulative damage.
✅ Cardiovascular risk.

Your journey to a healthier, empowered life begins now!

👩‍⚕️ Remember: if you need guidance regarding nutrition or diet, it's crucial to consult with your doctor and seek advice from a qualified dietitian-nutritionist.

👂 Stay tuned for our next challenge!
... See MoreSee Less

🙌 January is coming to an end!

🛣️ Throughout this first month of the year, weve discussed how to #KickLupus with the power of a balanced diet.

🥗 In a recent post, we highlighted that the Mediterranean diet stands out as the only one scientifically proven to be beneficial for lupus.

📚 This week, were diving deep into the groundbreaking study conducted by Gabriela Pocovi-Gerardino and colleagues, published in the Rheumatology journal in 2021, that demonstrates that the Mediterranean diet has a positive impact on lupus activity, cumulative damage, and cardiovascular risk.

🔴 The results of this study indicate that patients with higher adherence to the Mediterranean diet exhibited improved:

✅ Improved anthropometric profiles (body mass index, percentage of fat)

✅ Better levels of cardiovascular risk markers in the blood

✅ Enhanced levels of certain inflammatory biomarkers (including C-reactive protein, homocysteine, triglycerides, and albumin).

🔵 Another noteworthy conclusion from this study is that the consumption of specific components of the Mediterranean diet (olive oil, fruits, vegetables, sofrito, legumes, fish, and nuts), along with the avoidance of red meats and industrial products rich in sugars, is associated with a 𝗹𝗼𝘄𝗲𝗿 𝗹𝗲𝘃𝗲𝗹 𝗼𝗳 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗮𝗰𝘁𝗶𝘃𝗶𝘁𝘆 𝗺𝗲𝗮𝘀𝘂𝗿𝗲𝗱 𝗯𝘆 𝘁𝗵𝗲 𝗦𝗟𝗘𝗗𝗔𝗜 𝗶𝗻𝗱𝗲𝘅.

🦋 It is crucial to emphasise that achieving a SLEDAI score of zero is one of the requirements for lupus remission, as per the recent definition by the DORIS group.

🟣 Despite the studys limitations, the authors conclude that increased adherence to the Mediterranean diet has a positive impact on:

✅ Lupus activity.
✅ Cumulative damage.
✅ Cardiovascular risk.

Your journey to a healthier, empowered life begins now!

👩‍⚕️ Remember: if you need guidance regarding nutrition or diet, its crucial to consult with your doctor and seek advice from a qualified dietitian-nutritionist.

👂 Stay tuned for our next challenge!Image attachmentImage attachment
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