Patient Care/Therapy Recommendations
- International Progeria Registry
- Patient Care/Treatments
- Our Programs
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.
NEW!
As
of March 2012, the book is available in Portuguese. Click here to download the Portuguese version.
Novidade! A partir de março de 2012, 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.
A Message from the Medical Director
1. Progeria 101: Frequently Asked Questions
4. Emergency Care & Critical Care
5. Airway Management & Anesthesia
15. Systems that Function Normally
20. The Progeria Research Foundation & its Programs
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 info@progeriaresearch.org.
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.
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