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A selection of presentations from those speakers who have given permission for their slideshows to be published are now available to download on the AKU Society website at:
Thanks Oliver from the AKU Society
After these summer months, with a moody weather season and my health being as variable as the weather, here I am back to you taking a little time to write.
You certainly know that the AKU Society is organizing the 5th International Workshop on AKU This event will be held at the Medical Institution in Liverpool 18th-19th of November 2011.
The great news is that afterward in PARIS the French AKU Society will held the very first FRENCH meeting between patients/families and doctors on 9th and 10th December 2011 at the Plateforme Maladies Rares at the Hôpital Broussais.
This event will take place thanks to the hard work of Serge SIREAU (President of the French AKU Society “ALCAP”)
Thanks to his HUGE work here in France the MA.M.E.A. CENTRE DE REFERENCE DES MALADIES METABOLIQUES de l'Enfant et de ADULTS- at the “Hopital Necker” in Paris will soon care for AKU patients.
The work of international cohesion is consolidating.
It is important not to lose the motivation to continue on the way on which we as patients, with doctors and researchers, wish to go on and progress.
My hope is that there may be a brighter future for people with AKU; the fruits of research are often useful in fields much wider than than those originally planned.
Hope to read good news from you all pretty soon.
Leona | 3 months ago | Originally written in English Action shot photo competition of EULAR for world arthritis day
I just submitted an 'action shot photo’ to enter a competition of
the European Arthritis Foundation (EULAR) specially designed for the
world arthritis day. The slogan for this competition is move to
improve, i.e. how sport can improve mobility or slow down the
progress of one’s joint disease. I gather I may serve as an example in this respect, as I do 3 time a week swimming and go twice a week to the gymn. It really helped me to stay mobile and I get by with less pain killers. It also gives me the feeling to control at least in some part the disease.
There will be 12 winners, one per month and the winning price will be 250 €, an invitation to the EULAR autumn conference in Athen and the photo will be displayed at the EULAR calendar next year. In case I should win, the money will be donated to the Alkaptonuria Society: www.alkaptonuria.info/
to fund its research. Hence, you will vote for a good cause. By the way, I’m the scuba-diver with the snail ;-) . So please vote for me under:
I would also like to encourage everybody to also submitt their 'action shot' to raise the awareness of AKU. Even though we are few in numbers, if we join together, we will be noticed and get the attention we deserve.