Dell to match donation dollars for HPS post transplant program

Edwin Santiago has partnered with his employer, Dell, to help the HPS Network raise funds to purchase spirometers for post-transplant HPS patients. Spirometry is vital to post-transplant patients because even small changes can be the first tip off to potential rejection or infection issues, sometimes even before other symptoms are felt. Survival rates are better when such complications are treated early! Often, however, spirometers are not covered by insurance. Dell as agreed to match up to...

Team HPS attends American Thoracic Society International Conference

A team from the HPS Network attended the 114th American Thoracic Society International Conference in San Diego in May to hear the latest in pulmonary research, and to generate awareness of Hermansky-Pudlak Syndrome (HPS). More than 116,000 pulmonary doctors, researchers, nurses and therapists from 102 countries attended the conference. The HPS Network manned a booth on the exhibition floor to generate awareness, provide literature to interested doctors and researchers and to answer questions....

Dr. Drack, ophthalmologist, to speak at HPS Network Conference

Dr. Arlene Drack, an ophthalmologist from the University of Iowa, will speak to families affected by Hermansky-Pudlak Syndrome (HPS) at the HPS Network Conference, March 8 – 10, 2019 at the Long Island Marriott in New York. Dr. Drack is a clinician scientist specializing in juvenile inherited eye diseases. She is the inaugural Ronald V. Keech Associate Professor in Pediatric Ophthalmic Genetics at the University of Iowa Department of Ophthalmology and Visual Sciences. Her research focuses on...

American Society of Human Genetics announces 2019 Essay Contest

    The American Society of Human Genetics announced the question for the 2019 Essay Contest. The annual contest is open to students from around the world in grades 9 – 12. The winning submission will be awarded $1,000 and $1,000 in lab equipment for the student’s science teacher. There are also other prizes. The contest is one of many activities held to celebrate DNA Day, April 25th, 2019. The day honors the completion of the Human Geenome Project in April, 2003 and the discovery of the...

Steve Shank shares his HPS story with KARE 11 News

Steve Shank, an HPSer who received a double lung transplant two years ago, shared his story with Minnesota KARE 11 News in July. Steve had hoped to participate as a bicyclist in the American Transplant Games, but sadly had to stay home after being hospitalized with an infection. That didn’t stop him, however, from using his plans for the games as a way to share his story about HPS and about transplantation and organ donation. To watch the interview, go to:...

Caren Shank joins with doctors at the University of Iowa to present about HPS

Caren Shank returned to Iowa this past June to join with her husband’s ophthalmologists and give a presentation about Hermansky-Pudlak Syndrome at the 2018 Iowa Eye Annual Meeting. The presentation was called “The Importance of Gene Testing in Albinism – It Is Not Just Academic.” Caren and her husband Steve relocated to Minnesota two years ago after Steve was diagnosed with HPS. He received a double lung transplant at the Mayo Clinic soon thereafter. Caren presented with Dr. Arlene Drack and...

Contact Us


Phone: 1 (800) 789-9HPS
Email: info@hpsnetwork.org

Disclaimer


This Website is intended to provide information. It is not intended to, nor does it, constitute medical or other advice. Readers are warned not to take any action with regard or otherwise, based on the information on this website without first consulting a physician.