Janalee

In my capacity as Vice-President of IPWSO, I thought I would introduce myself and let you know what I am doing.  This September/October is going to be very busy!  I will be flying out from Florida to join Giorgio at the ESPE Conference in Prague on 21 September where we will set up an IPWSO booth in the same way we have done for previous ESPE conferences.  “ESPE” stands for European Society for Paediatric  Endocrinology and is  designed to improving the care of children with endocrine diseases by promoting knowledge and research.  IPWSO has been involved with these conferences for many years by promoting our work through sharing information, talking with doctors, networking and informing people about our free diagnosis for PWS at BIRD.  All this is done through our booth, and, believe me, we have built up an impressive data base of professionals throughout the world!

Giorgio & Janalee with Iranian doctor
at the ESPE booth

Straight after the ESPE conference I will be delivering presentations for the PWS Association of the Czech Republic over two days.  This will be an exciting time for me and I am looking forward to meeting as many people as possible during these two days.

ESPE booth at Istanbul

I will be taking a short break with Giorgio and his family before flying to Amenia.   In Armenia  I am taking part in the First International South Caucasian Conference on Rare Diseases and Orphan Drugs, and will be giving a presentation on PWS.  This first conference is an important step in gathering together a large group of parents and professionals interested not only in PWS, but also other rare diseases.  “Orphan” drugs are used to treat rare diseases and are developed through specialised research in many countries under that country’s public policy.  (In Europe, orphan drug registration is controlled by the European Medicines Agency through the Committee for Orphan Medicinal Products (COMP).   At this conference, I know I will catch up with many of our Eastern European members and I am looking forward to that very much.

I will return home on October 10^th.

Blogging from IPWSO

We thought we would start a blog for IPWSO, just to let you know what we are doing, who is doing it, where they've been, and what IPWSO is doing for the world.  For anyone stumbling across this blog, IPWSO stands for the International Prader-Willi Syndrome Organisation and you will find more about us on our website: http://www.ipwso.org/

Contributions will come in from all of us who work for IPWSO, and if anyone would like to send us their thoughts on anything to do with PWS, please send them straight to me for publication:  linda.thornton@xtra.co.nz.  I'm the Secretary for IPWSO and this is part of my work.  We hope you will enjoy our blogs.  We have had a busy year so far for 2010 with much preparation going into our 7th International PWS Conference which was held in Taipei, Taiwan.  Our international conferences are always a great experience, particularly as we have a wonderful mix of professionals and experts, along with parents, caregivers, and the people with PWS themselves.  This makes us into one huge global family; we get to know one another very well, and by sharing our knowledge, experience, and enjoying ourselves, we form a great network of support around the world.  So, I'm looking forward to hearing from you and to sharing more of our work, ideas, and thoughts.