Congenital Hyperinsulinism International (CHI) held a dinner meeting in New York City at the Beacon Restaurant on September 11, 2009. There were 56 people attending in all, including HI patients, parents, nurses, physicians, researchers, and other professionals from the health care industry.
The meeting also brought together members of the newly formed CHI Scientific Advisory Group and other specialists in the field. CHI is proud to report that medical professionals who attended and participated in the meeting are among the leading HI specialists in the world. Advisors in attendance from five countries included Dr. Lydia Aguilar-Bryan, Dr. Andrew Cotterill, Dr. Diva De León-Crutchlow, Dr. Morey Haymond, Dr. Khalid Hussain, Dr. Kusiel Perlman, Dr. Charles Stanley, Dr. Paul Thornton, and Dr. David Zangen.
The meeting was extremely successful in a number of ways. For the HI families, the dinner was a great opportunity to ask advisory board members questions on a variety of HI related topics. CHI board members and advisers were able to discuss how to work collaboratively in the future to improve the lives of HI patients. Topics of discussion included remarks on current research projects, encouraging participation in scientific studies, how to increase early diagnosis and raise awareness of the condition, how to provide more support and education to families worldwide, how to help HI families in parts of the world where treatment options and medical supplies are more limited, and how best to catalog HI-related patient outcomes in order to further research.
For many, the social part of the evening was equally compelling. Many of us made new friends within the HI community. It was also a chance to get back together with old friends and to share stories of how our children have matured and grown and the challenges we still face. The teenagers among us may have been the most excited about spending time together and feeling celebrated for who they are and what they have overcome.
The dinner meeting was planned to coincide with the LWPES/ESPE 8th Joint Meeting on Global Care in Pediatric Endocrinology that was also held in New York from September 9-12. All of the endocrinologists at the dinner meeting as well as a number of CHI board members attended the LWPES/ESPE meeting, where current research on a host of pediatric endocrine topics including HI were reported on and discussed. Many of the advisers presented their research over the course of the meeting. CHI also had a booth and presented a scientific poster at the meeting. At the booth we met many endocrinologists from around the world who are treating patients with HI. It was very gratifying to meet so many knowledgeable experts who care so deeply about their patients with HI. Many of them talked about the importance of education and awareness about the condition. We hope to be in touch with many of them and to find out how we can support patients and patient groups in their countries.
Thank’s Julie.
