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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.
Individual sections: all in form.
When using these materials for reports or presentations, please include
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.
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 firstname.lastname@example.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.