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Audio: AMA Network: Cutaneous Neurofibromas and Quality of Life in Adults With NF1
Short expert interview covering impacts of cutaneous neurofibromas and lived experience aspects.
Podcast: Oncology Today with Dr. Neil Love: Neurofibromatosis Type 1 Plexiform Neurofibromas
A detailed clinical discussion on specific NF1-associated tumours and treatment strategies.
Podcast: Neuro Pathways (Cleveland Clinic): Caring for Adults With Neurofibromatosis Type 1
A focused discussion on life with NF1 in adulthood with experts sharing clinical and care perspectives.
Consensus Recommendations for Current Treatments for Patients With Neurofibromatosis Type 2
A PDF of the consensus recommendations for Neurofibromatosis Type 2 (NF2-SWN) focuses on multidisciplinary care, prioritizing maximum safe surgical resection for symptomatic tumours and utilizing targeted therapies for progressive vestibular schwannomas.
Health Supervision for Children With Neurofibromatosis Type 1
Guidelines for monitoring and providing intervention to maximize the health and quality of life of a child affected with NF1 from the American Academy of Pediatrics.
Elisabeth Raab Neurofibromatosis Clinic (Toronto, ON)
Located at the University Health Network, this is the first and primary multidisciplinary clinic in Canada focused on adults with all types of NF It provides specialized care, including regular surveillance and tumor management.
Toronto General Hospital Clinic Contact for Inquiries: 416-340-4800 extension #3400
Podcast: Your Complex Brain – Episode: From Patient to Physician: One UHN Doctor’s Neurofibromatosis Story
This is an episode from a broader neuroscience podcast that features a physician’s personal story of living with NF plus clinical insights.
Book: Soundtrack of Silence: Love, Loss, and a Playlist for Life
A memoir of living with NF2 that blends personal journey and reflection written by Matt Hay. Purchase from Amazon or your favourite bookseller.
Provincial Medical Genetics Program
Focuses on assessing the risk for genetic conditions and ensures that patients understand their options and results in a compassionate and respectful environment.
Self-Management British Columbia
Offers free programs for adults living with ongoing health conditions.
HealthLink BC
Provides free, non-emergency health advice and information, including access to registered nurses, dietitians, and pharmacists who can help answer health questions. (dial 7-1-1 for deaf/hard-of-hearing) 811
Hereditary Breast Cancer Program
A person with breasts between ages 30 to 50 with NF1 is eligible for the Hereditary Breast Cancer Program which offers genetic counselling in addition to general support. Individuals can self-refer to the Hereditary Cancer Program. HCPHRC@bccancer.bc.ca Phone: 604-877-6000 ext. 673240 Toll free: 1-800-663-3333
Anxiety Canada
Offers trusted resources and programs to help individuals find relief from anxiety and obsessive compulsive disorder (OCD).
Health Connect Registry
People who don’t have a family doctor can register here so that health care planners can contact them when a provider becomes available .
PathwaysBC
An online health care directory and referral-support system where people can look up information about family doctors, nurse practitioners, and clinics in their community.
Indigenous Disability Canada / British Columbia Aboriginal Network on Disability Society (IDC/BCANDS)
Support and advocacy for Indigenous peoples with disabilities, including access to services and community education.
Disability Assistance – Province of BC
Disability assistance if you need financial or health support. You must be designated as a Person with Disabilities (PWD) to receive this type of assistance.
Canadian Pain Toolkit
A practical guide offering evidence-based strategies and tools to help individuals understand and manage chronic pain in daily life.
Pain BC
A provincial resource offering evidence-based information, tools, and support for understanding and managing chronic pain, including education for patients and healthcare providers.
Diagnosed with Schwannomatosis (SWN)
An informative booklet for patients diagnosed with schwannomatosis (SWN). This booklet is published by the American Children’s Tumour Foundation.
Diagnosed with NF2-SWN
A booklet created for anyone diagnosed with NF2-related schwannomatosis, or NF2-SWN (formerly called neurofibromatosis type 2).
Interview: Understanding NF1
In this Canadian Patient Voice interview, Dr. Lucie Lafay-Cousin, a pediatric neuro-oncologist at Alberta Children’s Hospital, discusses what families need to know about NF1- including diagnosis, follow-up care, and common concerns after a new diagnosis.
The NF Parent Guidebook
A 160-page resource designed to provide support and education to you and your family. It will guide you through your journey with NF and associated learning, behavioral, or social challenges. This book is published by the American Children’s Tumor Foundation.
Understanding NF2-SWM Comic
An eight-page educational comic book that tells the true story of Billy Nguyen, who was diagnosed with NF2-related schwannomatosis at the age of six. The story tracks Billy’s childhood struggle to understand his diagnosis and navigate tumours and progressive hearing loss.
NF2-SWN-Related Hearing Loss
A video sponsored by the Children’s Tumor Foundation that focuses on hearing & communication technology.
Travel Assistance Program (TAP BC)
The Travel Assistance Program (TAP) helps alleviate some of the transportation costs for eligible B.C. residents who must travel within the province for non-emergency medical specialist services not available in their own community.
Learning Disabilities Society
Provides personalized support to individuals of all ages with learning differences.
Individual Education Plans: A Guide for Parents
A detailed parent guide (available in multiple languages) that explains the IEP process, what the school will do, and how parents can participate and advocate during IEP meetings.
Super Emerson: A Book About NF1 For Kids
A children’s storybook introducing NF1 through an engaging character and narrative from the Children’s Tumor Foundation.
Talking to Your Child About NF1
A guidebook from the U.S. organization, Children’s Tumor Foundation, for parents to help explain NF1 to children.
FoundryBC
Young people aged 12-24 and their caregivers living in British Columbia can access free mental health and wellness same day services virtually through the Foundry BC app.
Provincial Medical Genetics Program
Focuses on assessing the risk for genetic conditions and ensures that patients understand their options and results in a compassionate and respectful environment.
ClinicalTrials.gov
Provides patients, their families and the public easy and free access to information on clinical trials.
Kelty Mental Health Resource Centre
An organization helping families across the province navigate the mental health system, connect with peer support, and access resources and tools to support well-being.
Transition to Adult Care
A resource from BC Children’s Hospital to support youth with special health-care needs and their families or caregivers to gain the confidence, skills and knowledge to be ready to enter the adult health-care system.
Understanding NF1-Associated Tumors
An educational handout prepared by a researcher at the Université de Sherbrooke Cancer Research Institute. It provides an overview of NF1-associated tumours and guidance on interpreting research findings. This resource is educational and does not replace medical advice.
Living with NF1 PN – Symptom Tracker
A downloadable symptom checklist designed for children and teens living with plexiform neurofibromas associated with NF1.
BC Children’s Hospital Neurosciences Program
Provides specialized ecare for children and youth with neurofibromatosis (NF) in British Columbia. As the province’s primary pediatric resource, they manage complex neurological conditions, including the monitoring and treatment of NF1, NF2-related schwannomatosis, and schwannomatosis.
Inspire Magazine #9
Provides specialized ecare for children and youth with neurofibromatosis (NF) in British Columbia. As the province’s primary pediatric resource, they manage complex neurological conditions, including the monitoring and treatment of NF1, NF2-related schwannomatosis, and schwannomatosis.
Inspire Magazine #8
Provides specialized ecare for children and youth with neurofibromatosis (NF) in British Columbia. As the province’s primary pediatric resource, they manage complex neurological conditions, including the monitoring and treatment of NF1, NF2-related schwannomatosis, and schwannomatosis.
Inspire Magazine #7
Provides specialized ecare for children and youth with neurofibromatosis (NF) in British Columbia. As the province’s primary pediatric resource, they manage complex neurological conditions, including the monitoring and treatment of NF1, NF2-related schwannomatosis, and schwannomatosis.
Inspire Magazine #6
Provides specialized ecare for children and youth with neurofibromatosis (NF) in British Columbia. As the province’s primary pediatric resource, they manage complex neurological conditions, including the monitoring and treatment of NF1, NF2-related schwannomatosis, and schwannomatosis.
Inspire Magazine #5
Provides specialized ecare for children and youth with neurofibromatosis (NF) in British Columbia. As the province’s primary pediatric resource, they manage complex neurological conditions, including the monitoring and treatment of NF1, NF2-related schwannomatosis, and schwannomatosis.
Inspire Magazine #4
Provides specialized ecare for children and youth with neurofibromatosis (NF) in British Columbia. As the province’s primary pediatric resource, they manage complex neurological conditions, including the monitoring and treatment of NF1, NF2-related schwannomatosis, and schwannomatosis.
Inspire Magazine #3
Provides specialized ecare for children and youth with neurofibromatosis (NF) in British Columbia. As the province’s primary pediatric resource, they manage complex neurological conditions, including the monitoring and treatment of NF1, NF2-related schwannomatosis, and schwannomatosis.
Inspire Magazine #2
Provides specialized ecare for children and youth with neurofibromatosis (NF) in British Columbia. As the province’s primary pediatric resource, they manage complex neurological conditions, including the monitoring and treatment of NF1, NF2-related schwannomatosis, and schwannomatosis.
Inspire Magazine #1
Provides specialized ecare for children and youth with neurofibromatosis (NF) in British Columbia. As the province’s primary pediatric resource, they manage complex neurological conditions, including the monitoring and treatment of NF1, NF2-related schwannomatosis, and schwannomatosis.
Checklist for Supporting Students with NF1
A practical, easy-to-use checklist for teachers that outlines classroom strategies to support students with NF1 across learning, motor, attention, and social challenges.
Supporting Students with NF1 in the Classroom – Facilitator Guide
A companion resource for educators or facilitators that provides background on NF1, detailed explanations of learning and behavioural challenges, and suggestions for individualized and social-emotional support.
Supporting Students with NF1 in the Classroom – Educator Presentation
A slide deck designed for workshops or staff training sessions that summarizes NF1 challenges and strategies in a clear, visual format for group learning.
Questions to Ask Before Surgery Info Sheet
One of the best ways to reduce your fear of surgery is to empower yourself with information.
Self-Monitoring for Malignancy in NF1 Tumours
Malignant peripheral nerve sheath tumours are rare in NF but early detection is vital.
Cutaneous Neuofibromas in NF1 Info Sheet
Cuteanous and subcutaneous neurofibromas, also called dermal neurofibromas, are the most common type of neurofibromas in NF1.
Patient Checklist for Managing NF1
A visual informational pamphlet to help you take charge of your symptoms.
Management guidelines for adults with neurofibromatosis type 1 (NF1) – Physician’s Guide
A research-based resource for health care professionals providing treatment to individuals with NF1.
Management Guidelines for Adults with Neurofibromatosis type 2-related schwannomatosis (NF2-SWN) Physician’s Guide
A research-based resource for health care professionals providing treatment to individuals with NF1.
Understanding the Risk of Breast Cancer in NF1 info sheet
Women with NF1 have an increased risk of developing breast cancer. Early and regular screening is critical to ensure any potential cancer is detected at a manageable stage.
How Drugs are Approved and Funded in Canada
This presentation, recorded at our 2022 symposium explains the Canadian drug approval and funding process, outlining the steps required before new NF treatments become available to patients in Canada.
Navigating Health Transitions – A Guide For Young Adults with NF
A comprehensive resource designed to simplify the journey of transitioning from pediatric to adult healthcare.
Discussing NF with Your Child
Initiating a conversation with your child about NF can be a daunting task for many parents. This resource provides helpful tips and suggestions for exploring this discussion with your child.
A Parent’s Guide to the Learning Disabilities Associated with Neurofibromatosis Type 1 (Punjabi)
Initiating a conversation with your child about NF can be a daunting task for many parents. This resource provides helpful tips and suggestions for exploring this discussion with your child.
A Parent’s Guide to the Learning Disabilities Associated with Neurofibromatosis Type 1 (Chinese)
Initiating a conversation with your child about NF can be a daunting task for many parents. This resource provides helpful tips and suggestions for exploring this discussion with your child.
Guia Para Pais e Educadores: sobre as dificuldades de aprendizado associadas à Neurofibromatose do Tipo 1
Initiating a conversation with your child about NF can be a daunting task for many parents. This resource provides helpful tips and suggestions for exploring this discussion with your child.
Guide à l’Intention des Parents: les troubles d’apprentissage associés à la neurofibromatose de type 1
Initiating a conversation with your child about NF can be a daunting task for many parents. This resource provides helpful tips and suggestions for exploring this discussion with your child.
A Parent’s Guide to the Learning Disabilities Associated with Neurofibromatosis Type 1
An evidence-informed resource for families and educators supporting students with NF1. Also available in French, Punjabi, Portuguese, and Chinese.
The Genetics of Neurofibromatosis and Schwannomatosis: All About Autosomal Dominance
This educational video explains the genetics of how an individual gets neurofibromatosis or schwannomatosis.