Join the HPS Network for patient day at the American Thoracic Society

A group from the HPS Network will be attending Meet the Experts, a patient program held at the American Thoracic Society by the Public Advisory Roundtable. This year’s theme will be “The Role of Patients in Advancing Treatments and Cures.” The seminar will be held Saturday, May 20, 2017 from 10:00 am to 2:00 pm at the Renaissance Washington DC Hotel, 999 9th St. NW in Washington DC. Parking validation, lunch and complimentary oxygen will be provided. Sessions will be about various aspects of...

Bag it for the Cure

Becky Nieves, a mother of a child with HPS and a board member of the HPS Network, is hosting an online fundraiser for the HPS Network with Mixed Bag Designs. Need a beach bag for a summer trip, or a backpack for the fall? Check out these colorful and stylish bags. Buy one for Mother’s Day and stuff it with great goodies for your mom! Fundraiser ends April 30th.

First Mothers’ Workshop held at the HPS Network Conference

  The first afternoon-long Mothers’ Workshop was held at the 24th Annual HPS Network Conference at the Long Island Marriott in Uniondale, N.Y. in March. The workshop was hosted by Sheila Adamo, LCSW, CADC, a licensed clinical social worker who has conducted similar workshops for other groups of mothers of children with disabilities. The workshop covered issues of interest to the moms of kids affected by HPS such as, how to explain and interact with extended family about concerns related...

Hermansky-Pudlak Syndrome Network to attend American Thoracic Society International Meeting

The Hermansky-Pudlak Syndrome Network (HPS Network) will attend, and exhibit at, the American Thoracic Society’s International Meeting May 19 – 24th in Washington DC. The meeting attracts more than 16,000 respiratory medicine physicians, scientists, clinical researchers and other related health care professionals from more than 90 countries. More than 6,700 abstracts and case reports are expected to be presented. More than 800 presenters are expected to present clinical research and best...

Hermansky-Pudlak Syndrome Network featured in the New York Post

The Hermansky-Pudlak Syndrome was one of the rare diseases featured in a recent article in the New York Post by Molly Shea. Donna Appell, CEO of the HPS Network, and her daughter Ashley, were featured in the article that ran April 3rd, 2017. To see the article, go to: