PA Rare Disease Advisory Council

@pardac.bsky.social

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