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X-WR-CALDESC:Events for Neurofibromatosis Northeast
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DTSTART;TZID=America/New_York:20260328T080000
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SUMMARY:Journey in Focus: A Retreat for Patients with NF1 in the Greater Philadelphia area
DESCRIPTION:Journey in Focus: A Retreat for Patients with NF1 in the Greater Philadelphia area \nHosted by NF Northeast \nSaturday\, March 28\, 2026\n8:00 AM – 4:00 PM \nThe Desmond Hotel Malvern\n1 Liberty Blvd\, Malvern\, PA \n(please note: Malvern\, PA is located approximately 25 miles NW of Philadelphia) \n What Is Journey in Focus? \nA one-day retreat designed to support individuals and families affected by Neurofibromatosis Type 1 (NF1) through education\, connection\, and shared experience. The program centers patient and care-partner voices and provides practical tools\, meaningful dialogue\, and opportunities to build community. \n Program Highlights \n\nUpdates in NF1 Care Management\nLearn about current care strategies\, emerging research\, and ongoing and upcoming clinical trials.\nPatient Learning Lab\nAn interactive space to gain practical tools and discuss real-life challenges of living with NF1.\nForums for Every Journey\nDedicated discussion groups for adults with NF1\, teens and young adults\, and care-partners.\nTopics That Matter\nSessions on developmental and social/emotional challenges\, mental health and wellness\, family planning\, and navigating school\, work\, and relationships.\n\n Connect\, Learn\, You’re Not Alone! \nREGISTER HERE or click on this link http://weblink.donorperfect.com/JourneyinFocusforNF1 \nFree to Attend\, Must Register  \nSpace is Limited! \nYou may also scan this QR code  \nA limited number of stipends are available for patients living in the Northeast region to offset the cost of travel and lodging. If you do not live in the Northeast\, you may join a waitlist\, and should stipends become available\, we will notify you. Please email Anne Patterson at apatterson@nfnortheast.org to request a stipend. Questions? Call 781-272-9936. *This retreat is for ages 14 years and up \nGenerously Sponsored by: Alexion Pharmaceuticals and SpringWorks Therapeutics
URL:https://www.nfnortheast.org/event/journey-in-focus-a-retreat-for-patients-with-nf1/
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2026/01/Untitled-design-3.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
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