The 2015 Congenital Hyperinsulinism (HI) Family Conference took place on September 29th and 30th at the Hospital Sant Joan de Déu in Barcelona, Spain. The Conference was a joint project of Congenital Hyperinsulinism International (CHI) and the Hospital Sant Joan de Déu. Participants gained a comprehensive understanding of HI including the history of basic scientific research, diagnosis, treatment, and care. Current standards in diagnosis and evaluation, current treatment options, and investigative initiatives were also covered.
The Conference is so unique because it brought patients, physicians, nurses, and scientists to learn together. Patients learned directly from the experts about the condition. Experts learned about the patient experience and initiatives from patients and global patient advocates. Speakers and participants from twelve countries gathered to share their expertise and learn from others. Almost every topic related to hyperinsulinism was covered. In addition to pediatric endocrinology, HI experts in basic science, physiology, genetics, psychiatry, biology, medical devices, and patient advocacy gathered and exchanged ideas.
Attending the conference was an unparalleled experience for the patient family because of the opportunity to learn directly from the experts, have important questions answered, all in a supportive environment. In addition to patients, patient families, and HI experts, this year’s conference included nurses and physicians who came to learn more about the condition.
CHI planned the conference to take place two days before the European Society of Pediatric Endocrinologists (ESPE) in order to recruit the highest level speakers. By piggybacking on the ESPE Conference, CHI was able to take advantage of all the endocrinology talent in town. The Conference took place in the state of the art auditorium of the Hospital Sant Joan de Déu. In order to facilitate communication and inclusion, CHI provided simultaneous translation into Spanish, French, and German. The Conference was sponsored and made posible by BioMarin, XOMA, and individual donors of CHI.
In addition to the incredible learning opportunities at the Conference, patient families had the opportunity to meet others living with the same rare condition. The experience of connecting with other people who live with HI, with similar but highly unusual challenges, was cherished by those who came. Caring for children with HI can be debilitating and knowing one is not alone in this journey can be extremely helpful.
Please check out the family conference presentations and slideshow from the Conference:
