Patient Care and Handbook

Because most medical caretakers have never treated a child with Progeria, there are often questions about how to optimize quality of life through daily care and medical treatment. To answer that need, in April 2010, PRF published the first edition of The Progeria Handbook, for families touched by Progeria and their doctors.  From basic health facts to daily care recommendations to extensive treatment guidelines, this 100-page handbook helps answer many questions for children with Progeria throughout the world.

In December 2018, PRF updated and edited every section of the first edition of the handbook. Some of the biggest changes to the second edition include a new section on genetics and genetic counseling for the health professional, and a plethora of new information from recent clinical studies stemming from the Progeria research community, including new cardiovascular, neurovascular and endocrine information as well as recommendations.

Click here to download the second edition of the Handbook in English.

When using these materials for reports or presentations, please include the following:
Source: The Progeria Handbook; A Guide for Families and Health Care Providers of Children with Progeria.
Copyright 2019 by The Progeria Research Foundation. All rights reserved.

We will continue to update these materials as more information comes in. If you have specific medical questions, please contact us at (978) 535-2594 or

Thank you to every child and family who participates in these very important projects, and to the medical caretakers and other experts contributing to these recommendations.

The first edition of the handbook is available in Spanish and Portuguese versions. Translations of the second edition of the handbook in Spanish and Portuguese will be posted on this page when available.

Click here to download the Portuguese version.

Clique aqui para fazer o download da versão em Português.

Click here to download the Spanish version.

Haga clic aqui para descargar la versión en español.