"The time is always right to do what is right."

Dr. King's words are universal, & we are reflecting on how they apply to healthcare. Doing what's right includes listening to rare disease communities & acting on their needs.

#pararedisease

On December 19, we lost our colleague, mentor, & friend, Patrick Collins.

Rest in Peace, Patrick. On behalf of all rare patients and their families, thank you for all that you gave.

Wishing you all a Merry Christmas & a happy, healthy holiday season!

#PARareDisease #merrychristmas #happyholidays

The holidays should be a time for joy. Help cut down on stress by setting up a Holiday Go-Bag

What is in your Holiday Go-Bag?

#PARareDisease #raredisease
#rarediseaseawareness
#HolidayTravel #AccessibleTravel

Travelling when you have a rare disease or chronic illness can be hard. But careful planning can make it more manageable, even during the holiday hustle and bustle.

#PARareDisease #raredisease
#rarediseaseawareness
#HolidayTravel #AccessibleTravel

Generosity Powering Progress.

It's Giving Tuesday. If you can, help support the many organizations dedicated to serving communities and helping people.

#PaRareDisease #PaRare #RareDisease
#GivingTuesday #InvestInHope

Tag a caregiver who deserves a break.

#PaRareDisease #RareDisease

Caregiving is meds, calls, waiting rooms, long nights & endless forms. It’s invisible, unpaid, and done with extraordinary love. We honor you this #NationalFamilyCaregiversMonth. #PaRareDisease

Rare Disease Day PA is coming!

📢 Save the Date!
🗓️ Monday, June 23
📍 PA Capitol, Main Rotunda

Join us for #RareDiseaseDay in Harrisburg to amplify patient voices & advocate for equitable care.

🤝 Press Conference & Legislative Lunch

#PARareDisease #raredisease

A round of applause for PARDAC member, Dr. Jerry Vockley! He was just recognized by NORD as a Medical & Scientific Trailblazers His leadership in rare disease research and care is transforming lives across PA and beyond.

Sunscreen isn't just for the beach!

Make using at least SPF 15 sunscreen part of your habit, even on cloudy days. Protecting your skin is an important part of maintaining long-term health.

#PARareDisease #skincancerawarenessmonth

April showers bring May flowers.

Even in the toughest conditions, we find a way to bloom. This is the spirit of the #raredisease community. Living rare requires great strength, but also reveals the extraordinary capacity for growth, adaptation, & finding purpose despite adversity. #PARareDisease

Take time to talk with your family this week! Gathering your family medical history isn't just for you—it can help future generations better understand their potential rare disease risks.

Start the conversation today!

#PARareDisease #raredisease #FamilyHistory #Genetics

Did you know your family medical history is a POWERFUL tool in the fight against #RareDiseases? Unlocking your genetic past can be key to diagnosis and better health outcomes.

#PARareDisease #rarediseaseawareness
#FamilyHistory #Genetics #MedicalHistoryMatters

Rare diseases are often misdiagnosed, but your family medical history could hold the key! Sharing your family's health story with doctors can help uncover patterns, leading to faster diagnosis and treatment.

#PARareDisease #raredisease
#rarediseaseawareness #MedicalHistoryMatters

We recently collaborated w/ PA Health Care Cost Containment Council on "Challenges in Rare Disease Research."

We thank the PHC4 team & leadership for their support on #RareDiseaseDay

Read the article at tinyurl.com/2adbsqjh

#PARareDisease