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....

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...

HPS Brotherhood makes plans for 2017-2018

The HPS Brotherhood – a group of men who are supporting or caring for a loved one with HPS – met for the second time at the 24th Annual HPS Network Conference. “We had 18 men there. They were husbands, brothers, boyfriends, sons – it doesn’t matter. It was just great to have such a good turnout of men looking for a way to get involved and support someone with HPS,” said Anthony Creer, founder of the HPS Brotherhood. The group agreed to set the goal of raising the nearly $20,000 it takes...

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