FUNDAVHIP: THE STORY OF FUNDAVHIP

By Anabell Sivira, Founder

The Venezuelan Foundation for Pulmonary Hypertension (FUNDAVHIP) was created as a response to the insignificant amount of information in Venezuela regarding PH. From there, a group of patients and a dedicated physician began the arduous task of making the disease known and getting other doctors interested in caring for PH patients.

Before FUNDAVHIP there was only one doctor in the entire country that saw PH patients: Dr. Douglas Olivares. After my diagnosis, another patient I knew left for Miami in search of treatments because in Venezuela there was nothing to guarantee that one would live. The Social Security system here did not cover her medication (Flolan) and she left Venezuela for good. I was taking only Sildenafil, and for a while I was fine with just this medication. However, my disease started to progress and Dr. Olivares prescribed Bostentan. But there was no information or any government coverage for such an expensive medication. As a result, we decided there was a need to create a PH foundation in Venezuela because so many others were facing the same problems.

© 2006

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

801 Roeder Road, Ste. 1000, Silver Spring, MD 20910   Patient-to-Patient Support Line: 1-800-748-7274
Webmaster@PHAssociation.org
    Privacy Policy   Virtual Tour of Website    Provide Feedback & Report Bugs

Designed by Matrix Group International, Inc.® | © 2014 Pulmonary Hypertension Association. All Rights Reserved.

NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.