IAPO Logo High Resolution
HI! from the IAPO (International Alliance of Patients Organisations) Global Patients Conference 2016!

I’m representing Lupus Europe at this amazing conference!   From www.iapo.org.uk  “150 patients’ advocates from 48 countries are meeting in London to discuss how innovation can help achieve universal, patient-centred and sustainable access to healthcare around the world.”

My objective here was to represent Lupus Europe (we are a voting member), and give visibility to lupus.

–> I have been tweeting as lupuseurope (just during this conference, usually it’s Nuria!) using the hashtag #GPC2016 and #lupus, so you can look through the tweets and see some photos and other quotes from the days.

It’s been very rich agenda so far.   Monday we started with what they called a “Speed-up dating” which was a fun meet and greet. We had two minutes to one person and we had to learn about each other. I met 15 people/groups in 30 mins! I think it’s a great idea to break the ice! 

Then we had the AGM where we heard old business, financials and elected five (!) new board members.

We heard from Jolanta Bilinska (Governing Board Chair) about IAPOs objectives, and Kahwaldip Sehmi, IAPO CEO, about his road to IAPO (he had such good care with his illness that he wanted to make sure everyone could have the same!)
They listed IAPO’s goals as:
Help patients’ organizations to be as effective as possible
Be the leading patients voice on health issues
Empower the global patient movement

They talked about how the UK Charity laws have changed, there are new ways of presenting budgets, and so that took time to adapt.

Keynote speaker: Nicolas Sireau gave a very inspiring speech, about Fundamental Diseases (he has two children with Black Bone disease, an ultra rare disease) It’s on Ted Talk so you can see what he has to say about why it’s so important to study rare diseases: https://www.youtube.com/watch?v=B4UnVlU5hAY

We had a talk from Professor Peter Boyle on the challenge of rising global cancer rates, particularity in lower and middle-class income countries.  He said we had to consider the patients, giving many memorable quotes, such as “statistics are patients with the tears wiped away.”

Then we had Workshops.  I was part of the workshop, “Building effective and innovative networks and campaigns for greater impact.” and presented the Patient Panel work on Adherence to Treatment done by Alain, Bernadette, Davide and Jeanette (among others) in 2014.  The presentation was really well received and so many people were impressed by the work done (well done team!!)

Penny Cowan, American Chronic Pain organisation, gave a really impressive talk about new tools they have invented and are trying to get passed to talk to doctors about pain.  I am sure we could do an excellent adaptation of one for lupus!  They are all available for download from https://theacpa.org/Communication-Tools

There was also an interesting talk from Mattias Wienold, European Aids Treatment Group, and summaries of the other workshops.  All talked about how we need to focus on the patients and the patients need to have endless persistence to get the results they want!

The presentation brought several people to come to talk to me about our lupus work.

End of Day one on Saturday evening – I’ll write about today’s meeting and some of the interesting people I met later or tomorrow.
Thinking of your all!
Anne

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1 week ago
LUPUS EUROPE

🚨 Call for patients🚨

🔊 INSPIRE SURVEY from the University of Cambridge.

This survey aims to improve the understanding of neurological symptoms in SLE and other rheumatic conditions.

Lupus is a very heterogeneous disease, which means that it affects people of different ethnic backgrounds and gender in different ways.

That is why, to get accurate research results, as many different groups as possible must be represented in the sample.

The INSPIRE survey was launched last year to get the patient experience on the assessment/monitoring of neurological symptoms, but they received very few responses from people from ethnic minorities.

That is why the research team led by Dr Chris Wincup has launched a new survey.

The new INSPIRE survey can be completed by lupus patients or their carers from around the world.

🟣 Please share as much as possible 🟣 in order to get a sample that includes a good proportion of all ethnic groups.

Thank you!

bit.ly/inspire_patients_short
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Comment on Facebook

I did it a second time and no it went good till the end

The survey was demolished.

1 week ago
LUPUS EUROPE

Discoid lupus erythematosus (DLE) is the most common form of chronic cutaneous lupus erythematosus. It is characterised by persistent scaly plaques on the scalp, face, and ears, which can progress to scarring, atrophy, depigmentation, and permanent hair loss in affected hair-bearing areas (Source: DermNet).

This study, published by Prof Marca Mosca et al., describes 2 cases of severe and refractory DLE successfully treated with anifrolumab, a human monoclonal antibody.

Although anifrolumab has been recently approved for the treatment of SLE, data from randomized clinical trials have shown a significant difference in cutaneous response rate in patients treated with anifrolumab from those in the placebo group.

While the effectiveness of this treatment in real life and in different types of skin lesions has yet to be determined, it could represent a new valid opportunity for treating DLE.

jamanetwork.com/journals/jamadermatology/article-abstract/2798967
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Discoid lupus erythematosus (DLE) is the most common form of chronic cutaneous lupus erythematosus. It is characterised by persistent scaly plaques on the scalp, face, and ears, which can progress to scarring, atrophy, depigmentation, and permanent hair loss in affected hair-bearing areas (Source: DermNet). 

This study, published by Prof Marca Mosca et al., describes 2 cases of severe and refractory DLE successfully treated with anifrolumab, a human monoclonal antibody. 

Although anifrolumab has been recently approved for the treatment of SLE, data from randomized clinical trials have shown a significant difference in cutaneous response rate in patients treated with anifrolumab from those in the placebo group. 

While the effectiveness of this treatment in real life and in different types of skin lesions has yet to be determined, it could represent a new valid opportunity for treating DLE.

https://jamanetwork.com/journals/jamadermatology/article-abstract/2798967Image attachmentImage attachment
1 week ago
LUPUS EUROPE

We know some of you missed the great seminar recently delivered by Prof. Laurent Arnaud.

Well, no worries!

You have the chance to see it again, thanks to the European Federation of Internal Medicine (EFIM).

"Challenges in 2023 for Systemic Lupus Erythematosus".

Next 29th of March at 18:00 CET (i.e. Paris time).

Register for free here!

us02web.zoom.us/webinar/register/WN_O5yMwjfgTS29pMKvOZfgZw
... See MoreSee Less

We know some of you missed the great seminar recently delivered by Prof. Laurent Arnaud. 

Well, no worries! 

You have the chance to see it again, thanks to the European Federation of Internal Medicine (EFIM). 

Challenges in 2023 for Systemic Lupus Erythematosus.

Next 29th of March at 18:00 CET (i.e. Paris time).

Register for free here! 

https://us02web.zoom.us/webinar/register/WN_O5yMwjfgTS29pMKvOZfgZwImage attachment
1 week ago
LUPUS EUROPE

Did you miss this ERN RECONNET webinar with Lou Kawka and Prof Laurent Arnaud about #fatigue in #SLE?

Now you have the chance to watch it!!! 😃🙌

www.youtube.com/watch?v=7jc7SiP5BsA
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Did you miss this ERN RECONNET webinar with Lou Kawka and Prof Laurent Arnaud about #fatigue in #SLE? 

Now you have the chance to watch it!!! 😃🙌

https://www.youtube.com/watch?v=7jc7SiP5BsA
LUPUS EUROPE Uniting people with Lupus throughout Europe
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