Hermansky-Pudlak Syndrome, a type of albinism that causes low vision as well as a bleeding disorder. It can cause a Crohns-like GI problem/pulmonary fibrosis
worldwide
Joined May 2011
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HPS Network retweeted
The Hermansky-Pudlak Syndrome Network is proactively using #CTTI #PatientEngagement recs to ensure #patient #inclusion in #raredisease trials. Learn how they’re setting the stage for impactful research! @HPSNetwork bit.ly/HPSNetworkcs
HPS Network retweeted
We are excited for our advocacy speaker today, Donna Appell, RN from the @HPSNetwork whose daughter Ashley has HPS, a bleeding disorder with albinism that also causes a Chrons like bowel disorder and pulmonary fibrosis
HPS Network retweeted
Our preprint presents #endocannabinoid #anandamide (#CB1R agonist) in blood has both early disease #biomarker and surrogate marker functions in Hermansky Pudlak syndrome pulmonary #fibrosis (#HPSPF) @HPSNetwork
Anandamide is an Early Blood Biomarker of Hermansky-Pudlak Syndrome Pulmonary Fibrosis medrxiv.org/cgi/content/shor… #medRxiv
HPS Network retweeted
This dinosaur wasn’t so scary!
What fun from the @HPSNetwork while raising awareness at #ATS2024 #CureHPS
HPS Network retweeted
Packed room to hear an outstanding speaker panel at the patients and experts forum during #ATS2024 | @atscommunity @HPSNetwork @scleroderma @LAMFoundation @CF_Foundation @CFRI_CureCF @PFFORG @StopSarcoidosis @VasculitisFound @PHAssociation @phaware @AllergyAsthmaHQ @RareDiseases @CheckOrphan @srfcure
HPS Network retweeted
In collaboration with @boehringerus, we’re hosting a panel with Yankees legend & Latin Grammy nominee Bernie Williams, who will share his personal connection to lung fibrosis. Join us by registering for the 2024 HPS Family Education Day today!
HPS Network retweeted
En colaboración con @boehringerus, estamos organizando un panel con la leyenda de los Yankees y nominado a los Grammy Latinos Bernie Williams, quien compartirá su experiencia personal con la fibrosis pulmonar.
HPS Network retweeted
First contact and a very kind and warm welcome by @HPSNetwork people in San Juan (Puerto Rico). Thanks to Enid Rivera, Ilda, @camachoc2000 Donna and the rest of fantastic members of this association who cares for persons with syndromic #albinism Looking forward for the meeting.
HPS Network retweeted
I AM ALS is appalled by Cigna’s decision to not cover an FDA approved treatment for ALS that extends functionality & life. Cigna needs to immediately reverse this decision. People living with ALS deserve better and don't have time to wait while battling an always fatal disease.
HPS Network retweeted
Currently, the free, more accessible #COVID19 tests are not available through the online system. Please call 1-800-232-0233 to order the tests. We are working to learn more about when the online system will be available.
Find COVID-19 guidance to protect you, your family and your community at COVID.gov, a one-stop resource for the latest information on #COVID19 prevention and reduction methods including masks, treatment, vaccines, and testing. covid.gov
ALT Your COVID-19 toolkit at COVID.gov Resources to keep yourself and others safe from COVID-19: - Masks: where to get free masks - Treatment: find a Test-to-Treat location near you - Vaccines: where to get the vaccine or booster - Testing: order free COVID tests
HPS Network retweeted
.@HPSNetwork is hosting an externally-led patient focused drug development meeting (EL-PFDD) on 6/10! Listen and learn from patients and caregivers of individuals living with #HermanskyPudlakSyndrome. Register here: bit.ly/3NRppYT #CureHPS
HPS Network retweeted
Proud of @LoyolaHealth @LoyolaIMRES resident Nayana Ramachandra & @LoyolaPCCM fellow @ksiddharthial for report at #ATS2022 w/ encouraging & SAFE outcomes for lung transplant in patients w/ Hermansky Pudlak Syndrome
@HPSNetwork @ZaidAbdelsattar @krishnanwarrior @BBPulmDoc @ISHLT
HPS Network retweeted
Listen to @StoryCollider’s podcast featuring stories from two of our @ChanZuckerberg grantees: @LFSAssociation and @HPSNetwork #RareDisease bit.ly/NotAlonePodcast
HPS Network retweeted
We’re joining the global community to spread hope and show rare disease patients they aren’t alone by illuminating our offices for #RareDiseaseDay
#LightUpForRare
ALT At night, CZI building is illuminated from the inside with lights. Through the windows you can see pink, green and purple lights glowing within the building.
HPS Network retweeted
New @storycollider podcast: 🎧@ChanZuckerberg grantees Jenn Perry of @LFSAssociation and Donna Appell of @HPSNetwork share their stories navigating a #RareDisease diagnosis bit.ly/NotAlonePodcast
HPS Network retweeted
The Temple Respiratory Therapist team implemented a new bedside bronchoscopy program to improve the usage of disposable or reusable bronchoscopy devices for patients - enhancing communication among clinicians while also being cost-effective. Read more: bit.ly/3IAFUqF
HPS Network retweeted
It’s Fall y’all! Couldn’t resist posting one of our cuties enjoying the season. Don’t forget the sunscreen! #curehps
