Flor Otero’s transplant story published in the Highlands News-Sun

  Flor Otero, who received a double lung transplant in May, shared her story with the Highlands News-Sun and it was published in the June 18th edition of the paper. Otero was able to share about her surgery, raise awareness about organ donation as well as explain Hermansky-Pudlak Syndrome to the general public. Flor says she believes she received a miracle and now hopes to help work on outreach to raise awareness about HPS. You can read the article here:...

HPS Network offers wallet card with QR code

The HPS Network is offering a wallet-sized medical health alert card that has a QR code physicians or emergency personnel can scan to instantly be directed to information about HPS, treating bleeding and even some of the key standard-of-care medical papers they might find helpful. The information is in both English and Spanish. A QR code is a symbol that has a barcode in it. The symbol can be scanned with any number of free applications available for all types of smart phones. Once scanned,...

Eat for the Cure at Mama Gina’s in Valley Stream, NY

Join the HPS Network and eat for the cure Saturday, Aug. 18 at Mamma Gina’s Pizzeria, 104 East Merrick Rd in Valley Stream, N.Y. The event will run from 4:00 pm to 9:00 pm. Mamma Gina’s Pizzeria will donate 20 percent of your bill to the HPS Network if you mention the HPS Network’s event when you order (and remind them when you pay). It is very helpful for planning purposes if you RSVP at: https://www.groupraise.com/events/62927 Thanks Amber Klein for organizing this event....

26th Annual HPS Network Conference to be held for families affected by HPS

  Families impacted by Hermansky-Pudlak Syndrome will gather for the 26th Annual HPS Network Conference, March 8 – 10, 2019, at the Long Island Marriott in Uniondale, N.Y. This year’s theme: “Life is Sweet When We Are Together.” The HPS Network Conference is a place for families, physicians and researchers with an interest in Hermansky-Pudlak Syndrome (HPS) from around the world to gather for fellowship, education and fun. The conference includes: Opportunities to meet and network with other...

Update the HPS Network on new developments in your health history

  Since you registered with the HPS Network, have you updated us about your health history? Keeping us up to date on major developments helps us find you should there be a research development or opportunity that might be applicable to your situation. Have you, for example, learned your gene type? Have you developed any other health issues such as GI complications or lung disease? Have you developed other health issues you might assume are not related to HPS such as arthritis or Lupus? This...

Find the right opportunity to participate in research

Without research, we will never find better treatments, and someday, a cure for HPS. If you would like to participate in HPS research let us know you are interested. There may or may not be an opportunity currently that is the right fit, but it helps if we know you want to participate should the right opportunity come along. You can e-mail Valerie Friedman, Director of Medical Affairs and let her know you’d like to check in to see if there is the right opportunity for you. Her e-mail address...

Contact Us


Phone: 1 (800) 789-9HPS
Email: info@hpsnetwork.org

Disclaimer


This Website is intended to provide information. It is not intended to, nor does it, constitute medical or other advice. Readers are warned not to take any action with regard or otherwise, based on the information on this website without first consulting a physician.