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We need you! Research opportunity! Participate in the NIH Symptom Scale Study, for more information email info@hpsnetwork.org

Jan 19, 2021



Our mission at the Network is to find a cure for HPS. This is the driving force behind all that we do. A cure is not possible without research and for that we need you!


We are reaching out to see if you would be interested in taking part in an NIH Symptom Scale Study. This study will be used to inform researchers about what problems and challenges are important to those living with HPS. It will ask how you are doing and explore your individual symptoms. This is vital in determining research priorities and possibly exposing needs not yet identified. Getting involved now will help us all become ready for research opportunities in the future.

In order to enroll in this study you need to have had your HPS diagnosis confirmed.
All types of HPS are needed.
Contact us at info@hpsnetwork.org if you are unsure, and we will help you.


To be considered for the study, please answer the following questions:

How were you diagnosed with HPS?
Have you ever been to the NIH?
Are you now or have you ever taken pirfenidone?

Please send your answers in an email to us at info@hpsnetwork.org along with your name, address and phone number.

The study can be done from home and it takes about 30 minutes. Please give us your full attention for that 30 minutes to help change lives. Be part of the solution!
Please send us your answers promptly.
Help us to help you and all the other HPS members.
Thank you in advance for making this effort a success!

Your HPS RESEARCH Support Team
Donna Appell, RN, Executive Director
Valerie Friedman, RN, Director of Medical Affairs
Hilda Cardona RN, Director of Affairs in Puerto Rico
Flavia Del Colle, PA-C, HPS Board of Directors
Carmen Camacho, LSW, HPS Board of Directors