HPS moms to gather for third annual Mothers’ Workshop at the HPS Network Conference

  Mothers of children with HPS will gather for their third annual workshop Friday, March 8, 2019 at the 26th Annual HPS Network Conference. The HPS Network Conference will be held March 8 – 10, 2019 at the Long Island Marriott in Uniondale, NY. The Mother’s Workshop will begin at noon and run until 6:00 pm. Moms will have a chance to network with one another, talk about the importance of self care and share ways to cope with the many issues surrounding raising a child with HPS. “We have...

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 difference!

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...

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:...