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.

Learn about how you can share this report using the Partner Patient Organization (PO) Toolkit Below!

Redefining Idiopathic Short stature: Driving change for children

Our Redefining ISS: A transformative project

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.

Our Redefining ISS: Confidence and Clarity Report

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:

Redefining Idiopathic Short Stature: Improving Confidence and Clarity (English)

English

French

Redefining Idiopathic Short Stature: Improving Confidence and Clarity (French)
Redefining Idiopathic Short Stature: Improving Confidence and Clarity (Italian)

Italian

What’s next for Redefining ISS?

This year, the Redefining ISS: Confidence and Clarity group are delighted to be launching a national consensus letter calling on policymakers and health decision-makers to recognize ISS as a medical condition.

This letter is the next step in our project built on the real experiences of families in our community. Together, we can change how idiopathic short stature is seen.

Redefining ISS: Improving confidence and clarity Partner PO Toolkit

Please share our Redefining ISS report with the people who can make changes and implement recommendations to improve the lives of children with ISS and their families.

We have developed a Partner PO toolkit linked below which has a summary of the report and guidance on the different actions you can take to share the report.

Please also use our social media posts below - don’t forget to tag us and add this link: REDEFINING ISS PROJECT so people can read the full report.

For inspiration on what to write, visit the Partner PO toolkit for some examples of messages and captions!

If you would like to develop your own posts, use the links below to access an editable template:

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.