Journey in Focus: A Retreat for Patients with NF1 in the Greater Philadelphia area
March 28 @ 8:00 am - 4:00 pm
Journey in Focus: A Retreat for Patients with NF1 in the Greater Philadelphia area
Hosted by NF Northeast
Saturday, March 28, 2026
8:00 AM – 4:00 PM
The Desmond Hotel Malvern
1 Liberty Blvd, Malvern, PA
(please note: Malvern, PA is located approximately 25 miles NW of Philadelphia)
What Is Journey in Focus?
A 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.
Program Highlights
- Updates in NF1 Care Management
Learn about current care strategies, emerging research, and ongoing and upcoming clinical trials. - Patient Learning Lab
An interactive space to gain practical tools and discuss real-life challenges of living with NF1. - Forums for Every Journey
Dedicated discussion groups for adults with NF1, teens and young adults, and care-partners. - Topics That Matter
Sessions on developmental and social/emotional challenges, mental health and wellness, family planning, and navigating school, work, and relationships.
Connect, Learn, You’re Not Alone!
REGISTER HERE or click on this link http://weblink.donorperfect.com/JourneyinFocusforNF1
Free to Attend, Must Register
Space is Limited!
You may also scan this QR code 
A 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
Generously Sponsored by: Alexion Pharmaceuticals and SpringWorks Therapeutics
