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!

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4 days ago

As much as we love hearing from you all and appreciate the time you take to share how you #kicklupus and inspire others, we cannot allow any content specifically about healing products for lupus.

We would greatly appreciate if you followed this rule when posting on the page.
Thank you
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1 week ago

#WorldLupusDay finishes today, but #lupusawareness does not. There is so much more we can do to make life with #lupus better. Watch our vice chair, Anne Charlet, talk about her journey of becoming a Board Member.
You can also join us and become a volunteer
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Wauvvvv SO good looking :-)

LUPUS EUROPE Uniting people with Lupus throughout Europe