When you hear hoofbeats, you think horses—but sometimes, it’s a zebra. Today, we wear our stripes for the 10,000+ rare diseases that need more research, more funding, and more hope.
#PARareDisease #ShowYourStripes #RareDiseaseDay
February is Rare Disease Month “Rare” doesn’t mean uncommon. It means millions of people, thousands of conditions, and families navigating care every day. This month is about visibility, understanding, and action. Because rare is many.
February is Rare Disease Month.
“Rare” doesn’t mean uncommon.
It means millions of people, thousands of conditions, & families navigating care every day.
It's about visibility, understanding, and action. Because rare is many.
#PARareDisease #RareDiseaseMonth #RareIsMany
"The time is always right to do what is right."
"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. Since the inception of the Pennsylvania Rare Disease Advisory Council, Patrick was a deeply engaged and thoughtful member whose commitment to making a meaningful impact for every Pennsylvanian living with a rare disease and their families was unwavering. He led with insight, care, and a steady presence that grounded our work and strengthened our resolve. Patrick was also a generous mentor. No matter how busy he was, he made time to guide others, offering encouragement, perspective, and thoughtful feedback that helped shape both our work and those of us fortunate enough to learn from him. He had a remarkable gift for translating vision and values from pen to paper, leaving a lasting imprint on our reports and our groundbreaking patient needs assessment survey. Patrick will be missed more than words can express. It is his kindness and his smile that we will miss most. We promise to continue working tirelessly for patients and their families in his name, carrying forward the values he so thoughtfully embodied. His memorial service will be held this Saturday at noon at Logan Funeral Home in Exton. Rest in Peace, Patrick. On behalf of all rare patients and their families, thank you for all that you gave.
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
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 It might include: - A list of emergency contacts - Medical alert cards or jewelry - Medications and backups - Water and Hydration packs - Snacks - Noise-cancelling headphones - Chargers - Comfortable clothing - Backups and comfort items What is in your Holiday Go-Bag? #PARareDisease #raredisease #rarediseaseawareness #HolidayTravel #AccessibleTravel
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
A reminder to caregivers: You cannot pour from an empty cup. Your well-being isn't secondary, it's not selfish, it's essential. We see your strength, now protect it. As we close out National Family Caregivers Month, we encourage you to seek rest, support, and moments of respite wherever you can.
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
