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

Join millions who have switched to Grok.

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

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

RT @curehht: we also are interested in opinions on educating the general public about value of rare disease research AND how to improve edu….

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

RT @NIHClinicalCntr: @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.

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

#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! http://t.co/rztpBDC0OT.

RT @VasculitisFound: "Miracles start to happen when you give as much energy to your dreams as you do to your fears." #Inspiration #Vasculit….

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

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

#albinism #pulmonaryfibrosis #Crohns New medical paper outlines basic care for patients with HPS throughout life.

#albinism Case report of a 92-year-old with HPS type 5.

#10mil4good #Goodsearch tweet "Doing good is. with these hashtags and help the HPS Network earn some money for the cure.