Meeting of the Minds tackles HPS research questions

A record number of researchers attended the 5th Annual Meeting of the Minds scientific meeting, held March 9 – 10 at the HPS Network Conference. In all 46 physicians and scientists, all working on various aspects of research related to Hermansky-Pudlak Syndrome, gathered to share findings and plot future goals. “It was amazing to watch so many great minds together,” said Donna Appell, Executive Director and Founder of the HPS Network, “It is exciting how quickly this meeting has grown, and how...

HPS community wishes NHLBI a Happy 50th

Attendees at the 26th Annual HPS Network Conference, held in Uniondale NY in March, created a video to wish the National Heart, Lung and Blood Institute (NHLBI) at the National Institutes of Health a happy 50th anniversary. NHLBI was pleased with the video and plans to use it at various events throughout the year. If you wish to follow the NHLBI through its 50th anniversary year, follow the hashtag #lung50. If you’d like to see the video, go to: https://youtu.be/1C1wwPzdeYY On April 9th...

HPS Network celebrates its 26th Annual Conference

    The HPS Network and community celebrated togetherness at the 26th Annual HPS Network Conference, held March 8 – 10, 2019 at the Long Island Marriott in Uniondale, NY. Themed, “Life is Sweet When We Are Together” the event attracted approximately 300 people affected by the Hermansky-Pudlak Syndrome (HPS) type of albinism, their families, physicians, interested researchers and supporters. Attendees shared stories about living with HPS, listened to medical experts explain key points...

April 6th to be Hermansky-Pudlak Syndrome Awareness Day!

This year the Hermansky-Pudlak Syndrome community is celebrating the first-ever Hermansky-Pudlak Syndrome Awareness Day! The day is devoted to generating awareness of the syndrome, as well as awareness of the problems we must overcome to find better treatments and a cure. Keep checking the HPS Network social media for the launch of our awareness ribbon. We hope you will also support our online social media campaign. The HPS Network’s facebook page is: https://www.facebook.com/hpsnetwork/ You...

Bailey to explain how people with albinism see at HPS Conference

Matt Bailey, a well-known and active member of the albinism community, will give a presentation to explain how people with albinism see at the 26th Annual HPS Network Conference. Bailey is an adult with albinism, however, does not have HPS. His presentation on how people with albinism see was well received at the National Organization for People with Albinism and Hypopigmentation (NOAH) Conference. Bailey is a marketing research analyst for the media industry. He served on NOAH’s Board of...

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...