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X-WR-CALNAME:Neurofibromatosis Northeast
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X-WR-CALDESC:Events for Neurofibromatosis Northeast
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DTSTART;TZID=America/New_York:20260303T190000
DTEND;TZID=America/New_York:20260303T200000
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UID:3829-1772564400-1772568000@www.nfnortheast.org
SUMMARY:NF Community Chat - March
DESCRIPTION:NF patients and their families/friends are invited to join us the evening of Tuesday\, March 3rd at 7pm EST for a community-building virtual chat! These chats are fantastic opportunities to meet others who are affected by NF and have casual conversations about the day-to-day concerns and questions that may arise. We hope you can join us at one or all of our upcoming virtual chats! \nRegister Here \n*After registering\, you will receive a confirmation email containing information about joining the meeting
URL:https://www.nfnortheast.org/event/nf-community-chat-march/
LOCATION:Zoom
CATEGORIES:Community
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/11/December-22-1.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260305T120000
DTEND;TZID=America/New_York:20260305T130000
DTSTAMP:20260210T184217Z
CREATED:20260210T184217Z
LAST-MODIFIED:20260210T184217Z
UID:4199-1772712000-1772715600@www.nfnortheast.org
SUMMARY:NF Summer Camps Information Session
DESCRIPTION:It’s time to start planning camps and activities for this summer! Join us for an information session that will highlight Double H Ranch in the Adirondack Region of NY\, The Woodlands Camp in PA\, and more! Representatives from each location will be sharing details about the unique programs that will be offered this summer! \nRegister Here
URL:https://www.nfnortheast.org/event/nf-summer-camps-information-session26/
LOCATION:Zoom
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2026/02/Summer-Camp-Info-Session-WEB.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260305T183000
DTEND;TZID=America/New_York:20260305T200000
DTSTAMP:20260306T185023Z
CREATED:20251122T155804Z
LAST-MODIFIED:20260306T185023Z
UID:3783-1772735400-1772740800@www.nfnortheast.org
SUMMARY:Stronger Together in Schwannomatosis
DESCRIPTION:NF Northeast is hosting a three-part miniseries that delves into topics related to our schwannomatosis (SWN) community. SWN experts will shed light on the importance of well-being\, pain management\, and understanding in-depth genetics for individuals living with schwannomatosis. Join us for one or all of these engaging discussions. \n\n\nSession 1: Tuesday\, January 27th\, 6:30-8:00 pm EST\n Living Well with Schwannomatosis\, Amanda Bergner\, MS\, LCGC\nAmanda will discuss the importance of well-being and mental/emotional health when living with a rare genetic condition such as SWN. The focus will be on coping with the diagnostic odyssey that often occurs with SWN. Discussions will focus on monitoring well-being\, relationships\, and quality of life.\n\n\nPAST EVENT \n\n\nSession 2: Tuesday\, February 3rd\, 6:30-8:00 pm EST\n Understanding Pain and Coping Strategies in SWN\, Frank Buono\, PhD\n               Dr. Buono’s session will be geared towards pain management in schwannomatosis. One of the top concerns of most individuals living with SWN is their pain. Join us for this interactive session with an expert and your peers to learn more about pain management guidelines and strategies.\n\nPAST EVENT \n\n\n\nSession 3: Thursday\, March 5th\, 6:30-8:00 pm EST\n In-depth Schwannomatosis Genetics\, Alicia Gomes\, MS\, CGS\n          Alicia will discuss the basics of genetics in schwannomatosis\, inheritance\, and the different variants. Receiving a diagnosis of schwannomatosis (SWN) and/or managing a complication from SWN can result in a range of emotions and medical interventions. Tune in to learn more about the genetics involved.\n\nPAST EVENT
URL:https://www.nfnortheast.org/event/stronger-together-in-schwannomatosis/
LOCATION:Zoom
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/12/thumbnail_SWN-SOCIAL-MEDIA-IDEAS3.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260315T173000
DTEND;TZID=America/New_York:20260315T193000
DTSTAMP:20260306T185432Z
CREATED:20260215T230542Z
LAST-MODIFIED:20260306T185432Z
UID:2731-1773595800-1773603000@www.nfnortheast.org
SUMMARY:Community Bowling Night - Boston
DESCRIPTION:We’re thrilled to bring the Rhode Island and Boston area NF Northeast community together for a night of strikes\, spares\, and connection! Meet other families\, share experiences\, and enjoy some fun in a relaxed\, welcoming environment. All are welcome! \nThis event is free to attend – RSVP encouraged.  Bowling and shoes are complimentary\, thanks to the generosity of Kings Bowling. Food and drink will be available for purchase.\n\nRSVP Here
URL:https://www.nfnortheast.org/event/family-bowling-night-boston/
LOCATION:Kings Dedham – Legacy Place\, 600 Legacy Place\, Dedham\, MA\, 02026
CATEGORIES:Community
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/02/Greater-Boston-7.png
ORGANIZER;CN="Lauren Gilbert":MAILTO:lgilbert@nfnortheast.org
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260328T080000
DTEND;TZID=America/New_York:20260328T160000
DTSTAMP:20260218T222343Z
CREATED:20260218T000530Z
LAST-MODIFIED:20260218T222343Z
UID:4106-1774684800-1774713600@www.nfnortheast.org
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/
LOCATION:MA
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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