Educating Endocrinologists Around the World

by Janalee Heinemann ~ IPWSO Vice-President

Thanks to an unrestricted educational grant from Pfizer, IPWSO was again able to provide an extensive amount of educational materials on Prader-Willi syndrome (PWS) to physicians at the European Society for Paediatric Endocrinology(ESPE) Conference that was held in Barcelona, Spain October 2015. It was the 54^th annual ESPE meeting. 

Giorgio, Janalee, Mariona

To show how much the interest in PWS has grown around the world, we had 460 flash drives with educational materials in multiple languages that we distributed, and all were gone before the end of the conference. We also distributed medical alert booklets in 17 languages. It is wonderfully encouraging to know we can make such a difference in a short period of time. As we have seen in the past, physicians from many countries were also very grateful to learn about our free diagnosis for countries that do not have the option of DNA methylation testing. 

IPWSO provides this service in collaboration with the Baschirotto Institute for Rare Disorders (BIRD). Some new countries that were especially appreciative of this option were Vietnam, Bahrain, and South Korea.

Dr. Maité Tauber, one of our PWS experts in France, gave two presentations on the syndrome, and there were 17 posters presented on PWS -- more than in any ESPE conference in the past. There was also a great interest from several pharmaceutical companies who are doing clinical trials, or are interested in doing clinical trials, on drugs for the syndrome. Most of them are working on drugs that have the potential to help the obesity and hyperphagia (uncontrollable drive to eat) so we are certainly happy to educate and work with them!

Mariona with promotional material

Some interesting facts from France that Maité presented are:

• The mean age of diagnosis was 17 days in 2013
• They have 54% with deletion and 43% with UPD (a higher rate of UPD than most studies have shown in the past)and 3% with translocation       
• The prevalence at birth in France is one in 19,000

Our awareness booth was hosted by me (Janalee), Giorgio Fornasier from Italy, and Mariona Nadal from Spain. Marguerite Hughes from Ireland also assisted prior to the conference in some of the organizational details and creating the flash drive. Mariona is a PWS sibling who is on our IPWSO board. This is the first conference in which she assisted us, and she was a tremendous help! Besides putting together some of the materials that had to be created in Spain, she was able to communicate with the many endocrinologists from Spanish-speaking countries, plus she also speaks French fluently. She was also able to explain our android App for PWS  called Prader-Willi World (PWW)– because she created it!

I am always impressed by Giorgio’s fluency in multiple languages and his understanding of the politics and cultural issues in so many countries. My expertise is in the medical and research field, so the 3 of us made a good combination of skills needed to communicate.

Mariona was able to see first hand what Giorgio and I have known for years – even though we have 3 days of long hours at ESPE, not including the massive amount of work it takes before the conference to get it organized - seeing what a difference we will eventually make in the lives of so many PWS families always revitalizes our spirit and enthusiasm. 

 

Giorgio, with Moris Angulo and his wife, Janalee, and Mariona

Each physician from the 41 countries who visited our booth will go back and share this information with other physicians who will then have the education and materials they can use that will help every PWS family they eventually treat. We cast our net wide upon the waters of the world and lives will be saved thanks to IPWSO – and thanks to Pfizer for making this possible through their funding.  

And it's thanks also to those generous people who donate to IPWSO that we can provide the specialised material that we do.  If you would like to help, just click the logo below...