Thursday, September 29, 2011

IPWSO at ESPE "Why wait for obesity to diagnose PWS?"

Dear IPWSO members,

I just wanted to give you an update on our IPWSO awareness booth at the ESPE conference.  Although it is the “European Society for Pediatric Endocrinology”  there are 2,500-3,000 participants from all over the world – and I mean all over the world.  Giorgio and I are both invigorated and exhausted!  We were just crazy busy today with people stopping by our booth for information on PWS.  There were times when even with the two of us, we could not talk to everyone or get them all scanned because there were too many at a time, but they all got one of the packets Giorgio put together.
IPWSO Booth at ESPE Conference, Glasgow

We have extensive packets for those who have no information, packets for those that received information from us before, but were looking for new information, and crisis packets for those dealing with weight and behavior issues.  I also brought a suitcase full (75) of our brand new growth hormone books that we created and printed at PWSA (USA).  Between Giorgio’s 9 cartons and my suitcase full, we only have 3 cartons left and have 2 ½ days to go!  We are looking at ways to stretch the information. 

Giorgio has been able to recruit physicians from three countries where we are not represented to be the IPWSO professional delegate.  We have also made contact with the key people at the two pharmaceutical companies that have the indication on GHT and PWS.  Having the new GHT booklet helped to peak their interest.  One physician from the country of Georgia even personally brought Giorgio blood samples to the conference in order to get the free diagnosis services we provide in collaboration with BIRD.  Another physician from Vietnam stopped to personally thank IPWSO for the free diagnosis services.  They are now getting children with PWS diagnosed in their country.

Giorgio and I make a good team for these conferences.  I handle the medical questions, but Giorgio is really the impressive one to watch in action.  He can greet people in almost any language and have conversations in 6-7 languages.  He also knows the delegates in all of the countries, so can discuss that with them.  He also works very hard to get all of the materials together (I send him the new articles we need to add) and knows the details on how to ship internationally – and of course, is renowned for being frugal!  He knows the conference organizers and they treat us well.  We have a great corner location for our booth.  As always, we are not in the fancy hotels with the doctors, but in a cheap one and Giorgio drove 4 hours to fly out of an airport where the flight was much cheaper. 
Iranian Delegate with Giorgio Fornasier

I am sharing this information so you can appreciate the significance of this important education service we offer, and the collaborative efforts between IPWSO, BIRD, and PWSA (USA).  

Warm regards,

Janalee Heinemann, MSW
Vice President, IPWSO
Director of Research & Medical Affairs
PWSA (USA)

3 comments:

  1. This is such an amazing thing that IPWSO does and must be the best possible way to contact professionals from around the world all at the same time! Despite the exhaustion, it must also be exhilarating!

    Linda Thornton

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  2. At a time, "full of energy and exhausted!". Congratulations! and grateful for this hard and long struggle.

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  3. Jackie Waters PWSA UKOctober 5, 2011 at 3:45 AM

    A really good way of getting to everyone out there. I think IPWSO is one of the few rare disease associations who do this well on an international basis - all credit to Giorgio and Janalee and everyone else involved.

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