Girl Scout Troop donates to HPS Network

Kylee Brantner’s Girl Scout troop voted to donate left over funds from their year to the HPS Network in July. Kylee is a person with HPS and has done several HPS fundraisers over the years with her friends. The HPS Network is grateful to Girl Scouts of Western Washington Troop 44267! It is ladies like all of you that make a...

Share your experiences with spirometry testing

  A group of healthcare professionals from the American Thoracic Society and the European Respiratory Society are working together to agree on the best and most appropriate spirometry testing methods. They are asking lung patients from around the world who have taken a spirometry test (a test that measures the amount of air in your lungs and how quickly you can breathe it out) to participate in a short survey about experiences taking the test. If you would like to participate, please go to:...

Share your experiences with home oxygen with the American Lung Association

The American Lung Association is asking patients with all forms of lung disease who are using, or have used, home oxygen to take a survey, the results of which, will be used to aid advocacy work in regard to access and quality of home oxygen. As patients with HPS, and thus patients with vision issues, we have a unique perspective to offer in this discussion. If you are using, or have used, home oxygen, please respond to this survey and share your experiences....

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,...

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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.