Living on the frontlines

We added a new member to the patient registry today. This now puts us at 36 to go on this year's Hundred People Search. 

The National Organization for Albinism and Hypopigmentation (NOAH) is offering a $3,000 scholarship award for undergraduate study at an institution in the United States or Canada. The Michael J. McGowan Leadership Scholarship Award was established in 2008 on behalf of NOAH to recognize leadership and empower young people with albinism. To learn more or to apply, go to: http://scholarship.albinism.org/

We've added another new person to the patient registry. This now puts us at 37 to go on this year's Hundred people search! 

The HPS Network is a sponsor of the Zing Conferences’ Lysosome Related Organelles Conference, to be held Feb. 13-16, 2014 in Nerja Malaga, Spain. Lysosomes are compartments inside cells that dispose of cellular waste as well as digest some compounds. Lysosomes are affected in those with Hermansky-Pudlak Syndrome (HPS). Scientists interested in diseases read more

We've added one new member to the patient registry - that puts us at 38 to go on this year's Hundred People Search  -  H.P.S. 

Dr. Bernadette Gochuico, a pulmonologist from the National Institutes of Health studying Hermansky-Pudlak Syndrome (HPS), spoke at the conference of the Pulmonary Society of Puerto Rico in November. She was invited by Dr. Luis Nieves , President of the society. The opportunity came about after read more at:  https://www.hpsnetwork.org/en/news/2014-01-03/gochuico-speaks-at-pulmonary-society-of-puerto-rico

A question I always get from members is, how can I volunteer to help the HPS Network? One way anyone with an internet connection can help is to be an online advocate.  Today’s world is an online world. Getting noticed isn’t as much about the actual number of people affected by HPS as much as it is about how engaged those of us with HPS are online and on social media. We can exercise as much muscle as some of the “big charities” if we are better at mobilizing our population. You’d be surprised how some of the little things you can do every day will help the HPS Network. Here’s a list of ways you can help online: 1. Share the HPS Network Website, www.hpsnetwork.org. Search engines crawl the internet and rank Websites based on a number of factors. One of the factors is how many other places and Websites offer a link to the HPS Network site. If you have a blog, please mention the HPS Network Website whenever you can. List it on your blogroll. If you’re posting to twitter or faceboo...