Patient Worthy

9 hours ago

From our friends Neurofibromatosis NetworkMeet Sarah Powlison. She joined the NF Network Advocacy program last year and has proven to be an amazing voice for NF. Read her inspiring thoughts below.

I was diagnosed with Neurofibromatosis Type 1 (NF1) the day I was born. My mom and older sister also have NF1, and a pregnancy scan had revealed a mass on my face. I was born with six tumors, about the size of an orange, growing out of my mouth. This, along with multiple café-au-lait spots (CALs), confirmed the suspicion that I have NF1. I was fortunate to have the tumors removed when I was just a few days old.

Read more Here: www.nfnetwork.org/pages-news/embracing-hope-my-journey-with-neurofibromatosis-and-the-power-of-ad...

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Patient Worthy

9 hours ago

A Cure In Sight Ocular Melanoma #RareDiseaseDay🏛️ Rare Disease Hill Day | Feb 23–26, 2026 | Washington, DC

A Cure in Sight (ACIS) is heading to Capitol Hill with the EveryLife Foundation for Rare Disease Week. We’ll meet with Members of Congress to advocate for increased rare disease research funding and faster access to treatments.

🎯 Our goal:
Bring a unified, patient-driven message directly to lawmakers — because rare disease patients can’t wait.

🤝 ACIS community events:
💬 Hill Day advocacy prep meeting
🍽️ Community dinner to connect and share stories

📝 Join us in DC or virtually:
forms.gle/N2QhTN6ExsPpcdLk8

💙🖤 Let’s make rare disease a priority on Capitol Hill.
#HillDay #RareDiseaseWeek #ACureInSight #SeeACure ... See MoreSee Less