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X-WR-CALDESC:Events for Positive Exposure
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SUMMARY:Hermansky-Pudlak Syndrome Network\, Family Conference
DESCRIPTION:April 4th-6th 2025 in Uniondale\, New York\nRegistration for our 2025 NY Conference now open!\nFamilies affected by Hermansky-Pudlak Syndrome gather each year for a conference. The HPS Network Conference is a place for families\, physicians and researchers with an interest in Hermansky-Pudlak Syndrome (HPS) from around the world to gather for fellowship\, education and fun. \nThis year’s conference will be held at the Long Island Marriott in Uniondale\, NY on April 4-6th. \nTo register for this year’s conference follow this link: Registration \nTo make a hotel reservation for the conference\, follow this link: Marriott Reservations \nA DRAFT Agenda for the conference is now available: 2025 Draft Agenda \nAn annual one day conference is also being held in Puerto Rico in 2025.  For more information on everything planned in Puerto Rico\, please visit our Puerto Rico events page \n\nWhat is HPS?\nHermansky-Pudlak Syndrome (HPS) is a genetic metabolic disorder\, characterized by albinism\, visual impairment\, and a platelet dysfunction that results in prolonged bleeding. \nSome people with HPS may develop other complications depending on the HPS gene involved; these include\, inflammatory bowel disease\, pulmonary fibrosis\, and kidney disease. \nCurrently there are 11 known types of HPS. The future might also reveal other unidentified HPS gene types. HPS can range from mild with few symptoms to very severe and disabling. Since HPS is an autosomal recessive disorder\, both parents must be carriers of the abnormal gene. \nHermansky-Pudlak syndrome\, was discovered in Czechoslovakia in 1959\, in two patients cared for by Dr. Hermansky and Dr. Pudlak. It has since been identified in many nationalities around the world—however it is very prevalent among people of Puerto Rican descent\, due to a “Founders Effect” on that island.
URL:https://positiveexposure.org/event/hermansky-pudlak-syndrome-network-family-conference/
CATEGORIES:Lectures & Presentations,Photography and Film
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UID:42276-1743757200-1743768000@positiveexposure.org
SUMMARY:Sickle Cell Awareness Annual Symposium
DESCRIPTION:The Sickle Cell Awareness Foundation Corp Int.\nHosting it’s Third Annual Symposium\nAdvancements in Sickle Cell Trait Research and Treatment\nWhat you Should Know about Sickle Cell Trait?\nFriday April 4\, 2025\n9:00 AM -3:00 PM\nQueens Hospital Center Auditorium\n82-68 164th Street Jamaica\, NY 11432\nBreakfast and Lunch will be served I!\nThis Symposium event will include speakers who are experts in Sickle Cell Disease\, as providers.\nTogether\, we will discuss new research about Sickle Cell Trait. Additionally\, we are especially\npleased to present a keynote speaker on Invitro Fertilization. \nMerlene Smith-Sotillo: 917-373-8434\nRobin Hogans : 718-926-0215 | Margarita Cabral : 347-286-3942\nMarva Fredrick : 646-371-3253
URL:https://positiveexposure.org/event/sickle-cell-awareness-annual-sumposium/
CATEGORIES:Lectures & Presentations,Photography and Film
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