Hpsnetwork.org

HPS Information Hermansky-Pudlak Syndrome Network

WEBHPS Network One South Road Oyster Bay, New York 11771-1905

Actived: 3 days ago

URL: https://www.hpsnetwork.org/hps-information/

Characteristics Hermansky-Pudlak Syndrome Network

WEBIt is a restrictive lung disease. In HPS, the typical age of onset of symptoms occurs in a person’s mid-30s (although some cases occur in individuals in their early 20s). Without …

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Standard of Care Hermansky-Pudlak Syndrome Network

WEBPrescription medications such as Amicar, DDAVP and tranexamic acid are available to promote and support clotting; for more information call (1-800-789-9477) or email the …

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Our Mission Hermansky-Pudlak Syndrome Network

WEBOur Mission. To provide education and vital support programs to individuals and families with Hermansky-Pudlak syndrome while striving for improved care and innovative …

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Melissa Merideth, M.D. Hermansky-Pudlak Syndrome Network

WEBMelissa Merideth, M.D. Dr Merideth is an OB/GYN that has an interest in HPS. A genetics researcher at the National Institutes of Health, Dr. Merideth is board certified in …

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Current Research Hermansky-Pudlak Syndrome Network

WEBThe National Institutes of Health has collected biological specimens from people with Hermansky-Pudlak syndrome. This includes DNA, blood, urine, tissue from biopsies or …

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Becky Nieves Hermansky-Pudlak Syndrome Network

WEBBecky Nieves joined the HPS Network Board of Directors in 2016. Her daughter was diagnosed with HPS in 2013 and she is active on the conference planning committee as …

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Dr. Gahl to present an overview of HPS research at the 24th …

WEBDr. William Gahl will present an overview and update of research on Hermansky-Pudlak Syndrome at the 24th Annual HPS Network Conference, to be held …

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HPS researchers gather for Meeting of the Minds

WEBThe third annual Meeting of the Minds brought together 38 doctors and researchers working to solve the mysteries of Hermansky-Pudlak Syndrome, March 11 …

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Dr. Merideth to present on women’s health issues related to …

WEBDr. Melissa Merideth will meet with those interested in learning more about how women’s health issues are impacted by Hermansky-Pudlak Syndrome at the 24th

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Dr. William Gahl receives Lifetime Achievement Award from the …

WEBDr. William Gahl, Clinical Director of the National Human Genome Research Institute, Head of the Undiagnosed Diseases Program and Senior Investigator, Medical …

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Lung Transplant Considerations Hermansky-Pudlak Syndrome …

WEBLung functionality – There is a window of opportunity to get a lung transplant. If your lungs are still too healthy, the center may ask you to wait to undergo an evaluation until your …

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HPS Network partners with NIH to create symptom scale tool

WEBTwelve people with HPS or their direct family/caregivers are taking part in focus groups to help refine an HPS symptom scale tool. The tool is a collaborati

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Souheil Y El-Chemaly Hermansky-Pudlak Syndrome Network

WEBDr. Souheil Y. El-Chemaly, M.D. Dr. Souheil Y. El-Chemaly is the Clinical Director of the Center for LAM Research and Clinical Care and a physician at Brigham and Women’s …

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Dr. Samuel Seward to attend the 26th Annual HPS Network …

WEBDr. Samuel Seward, a board member and scientific adviser to the HPS Network, will attend the 26 th Annual HPS Network Conference, to be held March 8 – …

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Mother’s Workshop planned for this year’s HPS Conference

WEBMothers with children that have Hermansky-Pudlak Syndrome will be able to network with each other and learn how to handle the common issues that come up rai

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Samuel Seward Jr., M.D. Hermansky-Pudlak Syndrome Network

WEBSeward is internationally known for his work with the Hermansky-Pudlak Syndrome patient population; He was the winner of the HPS Network’s Doctor of the Year award in 2010. …

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Carmen Camacho Hermansky-Pudlak Syndrome Network

WEBCarmen Lizzette Camacho, MA, LSW works as a clinical counselor at Advocates Community Counseling as well as an Emergency Room Mental Health Clinician. She …

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HPS Network partners with NIH to create HPS Fellowship

WEBHPS Network One South Road Oyster Bay, New York 11771-1905

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Newsroom Hermansky-Pudlak Syndrome Network

WEBSearch for: Home; HPS Information. What is HPS? Characteristics; Lungs. Lung Transplants; Lung Transplant Panel Video

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Ask Congress to Support the Safe Step Act

WEBJan 27, 2022. Ask Congress to Support the Safe Step Act (H.R. 2163/S.464) Step therapy, often called “fail first,” is a process that requires patients to take one or more alternative …

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Kevin O’Brien to present the basics of living with HPS at HPS

WEBKevin O’Brien, Associate Investigator for the HPS protocols at the National Institutes of Health, will present “HPS 101” at the 24 th Annual HPS Network …

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