HPSNetwork

International Hermansky-Pudlak Syndrome community for support and research.

[HPSNetwork @CureHPS]

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
https://t.co/D8EzsqzsQS
Or by phone Call [phone] Access Code: 430-463-013

[HPSNetwork @CureHPS]

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

[HPSNetwork @CureHPS]

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

[HPSNetwork @CureHPS]

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

[HPSNetwork @CureHPS]

Hermansky-Pudlak Syndrome Network is here. Thank you to the NIH for all you do for patients with rare diseases #NIHchat #HermanskyPudlakSyndrome #CureHPS https://t.co/y0MFIzG1wP

[HPSNetwork @CureHPS]

@NIHDirector Thank you Dr. Collins!

[HPSNetwork @CureHPS]

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

[Cure HHT @curehht]

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 https://t.co/u0f9EB2E5Q

[HPSNetwork @CureHPS]

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

[HPSNetwork @CureHPS]

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

[HPSNetwork @CureHPS]

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

[HPS Network @HPSNetwork]

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

[HPSNetwork @CureHPS]

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

[HPSNetwork @CureHPS]

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

[HPSNetwork @CureHPS]

#albinism #HPS #lowvision Tomorrow night, HPS information call - what you need to know for back-to-school. Get info: [email protected]

[HPSNetwork @CureHPS]

This Saturday, HPS New England Regional Picnic! http://t.co/rztpBDC0OT

[Vasculitis Foundation @VasculitisFound]

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

[HPSNetwork @CureHPS]

HPS Network supports the continuation of the Social Security Compassionate Allowances Program. http://t.co/pvHBsza7O9

[HPSNetwork @CureHPS]

Dr. Lisa Young awarded $1.9 million NIH grant to study HPS. http://t.co/UzfXYLmk20