HPSNetwork (@CureHPS) profile picture

HPSNetwork

@CureHPS

International Hermansky-Pudlak Syndrome community for support and research.

 Oyster Bay, New York
hpsnetwork.org
Joined July 2013
  • Tweets26
  • Following161
  • Followers82
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Photo by HPSNetwork (@CureHPS)Photo by HPSNetwork (@CureHPS)Photo by HPSNetwork (@CureHPS)
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PS families!!! Come join us !! let's gather and have fun virtually!! This Sunday, April 19 from 4:00 to 6:00 PM EST Please join my meeting from your computer, tablet or smartphone global.gotomeeting.com/join/… Or by phone Call +1 (646) 749-3112 Access Code: 430-463-013
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We're 2 graduate students studying Genetic Counseling at LIU Post, volunteering with the Hermansky-Pudlak Syndrome Network. We're happy to be a part of this chat and learn about patient resources and experiences .#nihchat #LIUPost #GeneticCounseling #HPSNetwork
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A3 With HPS Lung fibrosis research knowledge is gained and advances made in more common types of Pulmonary Fibrosis, HPS Colitis sheds light on Crohn's Disease #NIHchat
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Rare Diseases individuals have a lot of trouble transitioning from their pediatric doctors to adult medicine. We need to figure this out all together. #NIHchat
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Hermansky-Pudlak Syndrome Network is here. Thank you to the NIH for all you do for patients with rare diseases #NIHchat #HermanskyPudlakSyndrome #CureHPS hermansky-pudlak.org
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HPS Network with genetic counseling interns from @LIUPost engaged in the #NIHChat @NIH
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HPSNetwork retweeted
Cure HHT (@curehht) profile picture
Cure HHT@curehht23 Feb 2018
we also are interested in opinions on educating the general public about value of rare disease research AND how to improve education in the medical/scientific community @NIH #NIHChat #HHT teapawt.net/CureHPS/status/9671033…
HPSNetwork (@CureHPS) profile pictureHPSNetwork@CureHPS23 Feb 2018
How can we educate the general public about the value of researching rare diseases to progress research of common diseases? @NIH #NIHChat
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How can we educate the general public about the value of researching rare diseases to progress research of common diseases? @NIH #NIHChat
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How far away are we from having gene therapy for single gene disorders? #NIHchat @NIH
#ERSCongress Not everyone with Hermansky-Pudlak Syndrome is blonde. These ladies both have the syndrome. Look for nystagmus.
Image from HPS Network (@HPSNetwork)
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#albinism #HPS #lowvision Tomorrow night, HPS information call - what you need to know for back-to-school. Get info: [email protected]
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This Saturday, HPS New England Regional Picnic! hpsnetwork.org/en/events/201…
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"Miracles start to happen when you give as much energy to your dreams as you do to your fears." #Inspiration #Vasculitis #RareDisease
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HPS Network supports the continuation of the Social Security Compassionate Allowances Program. hpsnetwork.org/en/news/2013-…
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Dr. Lisa Young awarded $1.9 million NIH grant to study HPS. hpsnetwork.org/en/news/2013-…
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#albinism #pulmonaryfibrosis #Crohns New medical paper outlines basic care for patients with HPS throughout life. hpsnetwork.org/en/news/2013-…
#albinism Case report of a 92-year-old with HPS type 5. hpsnetwork.org/en/news/2013-…
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#10mil4good #Goodsearch tweet "Doing good is.....with these hashtags and help the HPS Network earn some money for the cure.
HPSNetwork retweeted
Goodshop (@goodshop) profile picture
Goodshop@goodshop22 Jul 2013
Excited to see our #10mil4good story shared on The Huffington Post @HuffPostImpact - gdsr.ch/1bGT0zA! Thanks @ISF_inspired
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