Redefining Idiopathic Short stature: Driving change for children 

Our Redefining ISS: A transformative project

Idiopathic short stature (ISS) is a rare growth condition and refers to children who are significantly shorter than peers with no established cause. For many families, ISS affects far more than height, and it can have a negative impact on children’s physical, emotional, and social wellbeing.

The Redefining idiopathic short stature: Improving Confidence and Clarity Project was created to address the clear needs of the ISS community. The project first aimed to understand the patient experience by gathering data from surveys, interviews and clinical research. This data was further explored through discussions with experienced individuals in this area and their thoughts were used to identify ways to improve the lives of these children and their families.rt Your Next Adventure

Our Redefining ISS: Confidence and Clarity Report

From this project, we have published a report in partnership with patient organizations and healthcare professionals which captures real lived experiences and outlines clear, actionable recommendations to improve care and quality of life. These recommendations are aimed at multiple groups including patient organizations, schools, healthcare systems, healthcare insurers, policymakers and more.

We thank the following individuals who played significant roles in the project and are authors in the report:

  • Béatrice Demaret, President, Association, GRANDIR

  • Cinzia Sacchetti, President, A.Fa.D.O.C aps

  • Courtney Rivard, Patient Advocate, The MAGIC Foundation

  • Alexander A L Jorge, MD, PhD, Associate Professor of Medicine at University of Sao Paulo School of Medicine / Genetic Endocrinology Unit

  • Marco Cappa, MD, PhD Professor in Paediatrics, Head of the Research Unit Innovative therapies for Endocrinopathies, Bambino Gesù Children’s HospitaI IRCCS, Rome

Read our report in:

English

French

Italian

Further information

The outputs of Redefining ISS: Improving Confidence and Clarity represent the views of ICOSEP and supporting patient groups. This paper is non-promotional and not specific to any treatment or therapy.

The Redefining ISS: Improving Confidence and Clarity project was created in collaboration with and funded by Novo Nordisk Health Care AG.