Endo-ERN ePAGs at ICOSEP Orlando

ePAG image
L-R: Johan de Graaf, Diana Vitali and Arlene Smyth

The work of Endo-ERN’s ePAGs took them across the Atlantic recently as they attended the International Coalition of Organizations Supporting Endocrine Patients (ICOSEP) meeting in Orlando, FL, USA. Attendees were treated to an international panel that covered topics such as:

  • Treatment challenges in various countries
  • Role of patient support organizations
  • Inclusion of Hormones as Essential Medicines (EML)
  • Strategies for success
  • Patient adherence
  • Best practice for social media and medicine

Johan de Graaf of the Dutch Pituitary Foundation, and an ePAG for MTG6, gave a presentation Historical Review of Experiences in Merging Patient and Medical Groups that was very well received.

Other Endo-ERN ePAGs in attendance were Arlene Smyth, Turner Syndrome Support Society, UK & Diana Vitali, Italian organization for septo optic dysplasia and other neuroendocrine disorders, Italy.

Thank you to our ePAGs for sharing their expertise with the global endocrine community!

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