Patient Care and Handbook

Because most medical care takers have never treated a child with Progeria, there are often questions about how to optimize quality of life and longevity of life through daily care and medical treatment. To answer that need, we have developed the Progeria Research Foundation Medical and Research Database in which we have compiled the health care records of children with Progeria and developed a centralized health database for use by health care professionals, medical researchers, and families of children with Progeria.

In April 2010, PRF published The Progeria Handbook, for families and 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.

Click here to download the handbook in English.

The book is available in Portuguese.  Click here to download the Portuguese version.

O livro sobre progéria estará disponível em Português.  Clique aqui para fazer o download da versão em Português.

The handbook is also available in Spanish Click here to download the Spanish version.

el libro está disponible en español. Haga clic aqui para descargar la versión en español.

Individual sections: all in form.

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 2010 by The Progeria Research Foundation. All rights reserved.

Book Cover and Disclaimer


Table of Contents

A Message from the Medical Director


1. Progeria 101: Frequently Asked Questions

2. Cardiology

3. Neurology/Strokes

4. Emergency Care & Critical Care

5. Airway Management & Anesthesia

6. Nutrition

7. Eye Care

8. Audiology

9. Dental Recommendations

10. Skin/Dermatology

11. Bones/Orthopedics

12. Physical Therapy

13. Occupational Therapy

14. Podiatry

15. Systems that Function Normally

16. Going to School

17. Living with Progeria

18. Aging & Progeria

19. Drug Treatment Trials

20. The Progeria Research Foundation & its Programs

Clinical Care-at-a-Glance


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 care takers and other experts contributing to these recommendations.