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...

Join the HPS Network at Outback Steakhouse to eat for the cure

Enjoy a juicy steak and help us fund the cure, Sept. 25 between 4:00 pm to 9:00 pm at the Outback Steakhouse, 901 Route 73 South in Marlton, NJ. Tell the server you’re there to support the HPS Network, and a portion of your bill will benefit us. Enjoy some steak and lobster, or some Queensland chicken and shrimp pasta. Or, maybe a salted caramel cookie skillet for dessert....

HPS Multidisciplinary Clinic to be held in Mayaguez

A multi-disciplinary clinic for anyone with HPS will be held Oct. 20 at Mayaguez Medical Center in Puerto Rico. The clinic is free, and is a chance for children and adults with HPS to consult with a variety of physicians knowledgeable about Hermansky-Pudlak Syndrome. There are a limited number of appointments available, so don’t wait too long to make yours. Limited transportation assistance is available. Physician experts will include: Pulmonary – Dr. Monia Egozcue, Dr. Rosa Roman and Dr....

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 to...

Girl Scout Troop donates to HPS Network

Kylee Brantner’s Girl Scout troop voted to donate left over funds from their year to the HPS Network in July. Kylee is a person with HPS and has done several HPS fundraisers over the years with her friends. The HPS Network is grateful to Girl Scouts of Western Washington Troop 44267! It is ladies like all of you that make a...

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.