PA Rare Disease Advisory Council
pardac.bsky.social
PA Rare Disease Advisory Council
@pardac.bsky.social
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
December 2, 2025 at 8:59 PM
Tag a caregiver who deserves a break.

#PaRareDisease #RareDisease
November 30, 2025 at 4:24 PM
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
November 26, 2025 at 3:30 PM
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
June 13, 2025 at 1:40 PM
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.
Meet the 2025 NORD #RareImpactAward Honorees! 🚨

From trailblazing researchers to unstoppable advocates and game-changing treatments — these leaders are transforming the future of #RareDisease care. 💜

Read the full list and stories about each Honoree: rareimpact.org
May 31, 2025 at 5:38 PM
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
May 27, 2025 at 11:43 PM
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
April 29, 2025 at 2:51 PM
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
March 28, 2025 at 12:30 PM
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
March 25, 2025 at 2:45 PM
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
March 19, 2025 at 2:15 PM
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
February 28, 2025 at 3:33 PM