The Role of IPWSO at ESPE in Ireland, 2014

by Janalee Heinemann ~ IPWSO Vice-President

Although the European Society for Pediatric Endocrinology (ESPE) is three days of long hours and a lot of work preparing before the conference, it always revitalizes our spirit and enthusiasm. Giorgio Fornasier and I distributed memory sticks with extensive information on Prader-Willi syndrome including the medical alert booklet in 16 languages to 330 endocrinologists from around the world. They all were absolutely delighted to get so much information in such a small package. We had all of the articles displayed so they could see what information they were getting, and also gave some of the endocrinologists a hard copy of the Medical Alert booklet in their own language. There were eight posters presented on PWS at the conference. 

Giorgio Fornasier with doctors from China

We want to give a special thanks to Pfizer for their donation of an unrestricted educational grant that makes our involvement in these conferences possible.

Besides general education for physicians working with the syndrome, the ESPE meeting gives us an opportunity to learn a lot about what is going on in each country, and how to enhance our connections with that country. The following are some examples of touching stories that show the impact IPWSO has had on the world:

·       China is a good example – A country where there had been no diagnosis or education on the syndrome – to the first ESPE where we acquired a professional delegate -- followed up by free diagnosis -- to helping put together the first PWS conference in China in 2005 -- to now less than 10 years later where they are creating guidelines on the syndrome and we had 14 endocrinologist from China come to our booth for more information all stating they now have patients with the syndrome. Several asked if they could take a memory stick back to their colleague who could not attend.

·       Iran is another good example – Just a very few years ago, for the first time, we met a wonderful endocrinologists from Iran who attend ESPE and stopped by our booth to get information – she agreed to be our professional delegate -- followed up by free diagnosis – at this ESPE, we had 20 endocrinologists stop by our booth for information because they are treating patients with PWS.

·       Honduras touches your heart – At ESPE we met the endocrinologists who became the professional delegate for Honduras – followed up by free diagnosis – then two years ago Giorgio and Dr. Moris Angulo went to Honduras to meet with medical professionals and families   (our professional delegate said they knew of 12 families dealing with PWS, but they never succeeded in getting them together) – when Giorgio and Moris came to speak, 10 of the families attended – at this ESPE our professional delegate said they are starting an Association and will have a PWS clinic at their new hospital. Thanks to Giorgio, the Vatican radio keeps promoting awareness on the syndrome in this country.

·       Bulgaria also stopped to give praise – through the same type of evolution – a professional delegate through ESPE – free diagnosis – Giorgio and Pam Eisen going to Bulgaria to meet the professionals and families – to the professional delegate at this ESPE thanking Giorgio and saying now they have an Association. He said they have officially made Giorgio half Bulgarian!

·       United Arab emirates endocrinologists said we as parents are an inspiration – two female endocrinologists told of a few very tragic situations in their country including one mother who cried every time she came to see them because her 15-year-old child with PWS was so obese he had to be in a wheelchair and mom did not know how to handle him. They said they wished she could meet parents like us and know there was hope.

·       Then there are the countries in the early evolution – a wonderful physician from Saudi Arabia showed great interest in PWS and getting more connected – we met our first contact for Azerbaijan -- an endocrinologist from Uganda was very eager to get the information and get more connected… and the list goes on.

When you think about the fact that besides a wonderful board of PWS parents and professionals, and only two part-time parent employees who get very minimal salaries, it is amazing to realize that with very limited funding, how much IPWSO does and how many save lives are saved around the world!