PA Rare Disease Advisory Council

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

13.06.2025 13:40 — 👍 1    🔁 1    💬 0    📌 0

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.

31.05.2025 17:38 — 👍 5    🔁 3    💬 0    📌 0

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

27.05.2025 23:43 — 👍 0    🔁 0    💬 0    📌 0

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

29.04.2025 14:51 — 👍 2    🔁 0    💬 0    📌 0

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

28.03.2025 12:30 — 👍 1    🔁 0    💬 0    📌 0

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

25.03.2025 14:45 — 👍 0    🔁 0    💬 0    📌 0

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

19.03.2025 14:15 — 👍 3    🔁 1    💬 0    📌 0

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

28.02.2025 15:33 — 👍 2    🔁 2    💬 0    📌 0