HPSNetwork

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/430-463-0… Or by phone Call +1 (646) 749-3112 Access Code: 430-463-013

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

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

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

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

@NIHDirector Thank you Dr. Collins!

HPS Network with genetic counseling interns from @LIUPost engaged in the #NIHChat @NIH

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 twitter.com/CureHPS/status…

How can we educate the general public about the value of researching rare diseases to progress research of common diseases? @NIH #NIHChat

@CureHPS @NIH We think we will see gene therapy for a number of single gene disorders in the next five years. #NIHchat

How far away are we from having gene therapy for single gene disorders? #NIHchat @NIH

@NIH The genetic counseling students interning with the @CureHPS are here to say hello! #NIHChat

#ERSCongress Not everyone with Hermansky-Pudlak Syndrome is blonde. These ladies both have the syndrome. Look for nystagmus.

@PSRorphan Great video!! So encouraging and made me smile and feel proud of us all.

@repsteveisrael Please support and cosponsor 21st Century Cures and the Open Act!!

#albinism #HPS #lowvision Tomorrow night, HPS information call - what you need to know for back-to-school. Get info: camachoc2000@yahoo.com

This Saturday, HPS New England Regional Picnic! hpsnetwork.org/en/events/2013…

"Miracles start to happen when you give as much energy to your dreams as you do to your fears." #Inspiration #Vasculitis #RareDisease

HPS Network supports the continuation of the Social Security Compassionate Allowances Program. hpsnetwork.org/en/news/2013-0…