Kiddos are heading back to school and we’re here for all the cute pics! What are your best tips and tricks to start of the year right? #raredisease #chronicillness #awareness #findacure #nonprofit #health #goodvibesonly #determined #mystory #curehps #hermanskypudlaksyndrome

Set your week up for success! Write out those intentions and commit! And we hope supporting the Network is on that list ;-)

Have you been to our YouTube Channel lately? It’s THE place to look for our new video content! Did you know there is even a recording of a webinar we did on an IEP vs a 504 for our kiddos? Go subscribe! #beinformed #hermanskypudlaksyndrome #specialeducation

Bonnie is rocking 4th grade! You know what else will be rocking? Wednesday night’s Town Hall with Donna! Come ask questions, get updates and #bepartofthesolution

On National Wellness Day, we celebrate the resilience of rare disease patients. Prioritize mental health, stay active, eat well, build support, self-advocate, and find joy in small wins. Wellness is a journey! #curehps #hermanskypudlaksyndrome #rarediseaseawareness

You don’t want to make Donna cry again do you? Join us tonight at the Town Hall! #curehps #hermanskypudlaksyndrome #bepartofthesolution #beinformed #rarediseaseawareness

“Every school year our hematology team does a zoom meeting with our kiddo’s new teachers, recess aids, school nurse, ect… It really puts me at ease to know that they have been properly prepped for our girl’s school year.”

Summer Sun Safety Month! And with the holiday coming up, don’t forget: Stay sun-safe! Wear SPF 30+ sunscreen, reapply every 2 hours, seek shade, and wear hats and sunglasses. Protect your skin and stay hydrated for a healthy, sun-filled day.

“We make sure that her teachers, nurse and staff have all the information on HPS and Albinism that we can and the telephone number ls for her hematologist, specialists and her doctor”

“This year I made a red folder with information regarding HPS, Albinism, and Her Bleeding “plan” her Hematology team created! There is one in her back pack, with her teacher, and in the clinic! It’s gonna be a great year!!”

"Hello, September! 🍂 Embrace the new month with fresh energy and exciting adventures. Here's to new beginnings and unforgettable moments!" Don't forget to check your email for September events! #curehps #hermanskypudlaksyndrome #raredisease #ourstory #goodvibes #awareness

“Strength isn’t just in the work we do, but in the battles we face every day. This Labor Day, we honor the resilience of those living with rare diseases.”

#hpspuertorico #curehps #hermanskypudlaksyndrome

William’s HPS Story! #curehps #hermanskypudlaksyndrome #hpsawareness #ourstories

#hpspuertorico #clinicagratis

Schirmerstock!!!! One family’s story to help fund a cure for HPS! #curehps #hermanskypudlaksyndrome #hpsawareness #fundingacure #bepartofthesolution #raredisease

We would just like to send yet another HUGE thank you to everyone who supported Schirmerstock 2024! Never, ever doubt that YOU TOO can make a difference! #curehps #hermanskypudlaksyndrome #ourstories #bepartofthesolution

“Even the smallest act of service, the simplest act of kindness, is a way to honor those we lost, a way to reclaim that spirit of unity that followed 9/11.”

Join us for a Town Hall Meeting, on Wednesday, September 18th at 8pm ET. Donna will be giving an update on the work the Network is doing. It is also the perfect setting to bring all of your HPS questions and concerns.

We are so lucky and grateful to have such an amazing group of advocates! #curehps #hermanskypudlaksyndrome #bepartofthesolution