HPS Network sends medical supplies to Puerto Rico

The HPS Network raised nearly $3,500 to help with relief efforts in Puerto Rico after hurricanes Maria and Irma. After being in contact with some of our friends in the medical community regarding what was needed, the Network purchased medical supplies and sent them, with HPS Network Board of Director member Hilda Cardona, to Puerto Rico. The Appell family helped to encourage donations by offering a $1,500 matching grant. Puerto Rico has a long way to go to recover from these devastating...

Room block reservations open for 25th Annual Conference

Make hotel reservations now to attend the 25th Annual HPS Network Conference, March 9 – 11, 2018 at the Long Island Marriott in Uniondale, N.Y. Rooms are $154 a night plus tax with the room rate. The theme of this year’s conference is Our True Colors and the banquet dinner will be a celebration of our 25th (silver) anniversary! Don’t miss this historic, and informative, event. To make reservations online, go to: http://tinyurl.com/hps252018, or to make reservations by phone call: 516.794.3800....

Singing camp raises money for HPS

Joanne Criblez’s summer camp voice students gave a concert to raise money and awareness for Hermansky-Pudlak Syndrome (HPS) Thursday, Aug. 10th at the LIU-Post Hillwood Commons Theatre, The performance, “A Night At The Movies Summer Cabaret” and featured music from iconic film scores. Joanne Criblez is a long-time supporter of the HPS Network and Ashley Appell’s voice coach. For many years she organized the HPS Christmas Concert with the J-Band as well as music at the HPS Network Conference in...

Coach Grill and Tavern raises funds for the HPS Network

  The Coach Grill and Tavern in Oyster Bay, N.Y. raised funds for the HPS Network by selling t-shirts at their recent pig roast anniversary party. They also recently made the HPS Network the recipient of donations earned through the cocktail of the month! The Coach Grill and Tavern is a long-time supporter of the HPS Network. Thanks so much for your support, and Happy...

HPS Network launches Puerto Rican Relief Fund

The HPS Network has set up a Puerto Rican Relief Fund to help Puerto Rico, an island devastated by the ravages of Hurricanes Irma and Maria. The island is home to the largest population of families affected by Hermansky-Pudlak Syndrome, a genetic disorder that involves albinism, low vision and a bleeding disorder. Depending on the gene involved, it can also cause digestive disease and/or pulmonary fibrosis (a fatal scarring of the lungs). The HPS Network has worked in Puerto Rico for many...

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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.