Discussing NF With Your Child

Initiating a conversation with your child about neurofibromatosis (NF) can be a daunting task for many parents. Most feel unprepared to navigate this discussion successfully. There isn’t a one-size fits-  all approach and there is no singular ‘right’ or wrong’ way to have this conversation. This resource provides helpful tips and suggestions for exploring this discussion with your child.

Canadian Persons With Disabilities (PWD) Discount Guide: The Ultimate List

The Dealhack Canadian Persons With Disabilities Discount Guide is the result of our quarterly survey of discounts and support programs for persons with psychological, psychiatric, or cognitive disabilities. Every 3 months, our team independently verifies each and every PWD discount on this list. We also add more brands to the list regularly when we come across them.

The list currently includes more than 40 store brands and government agencies conveniently broken down into 7 categories. You can also save or print the list to use as a handy reference.

Learning Disabilities & Education

NF Guide for Educators

Children with NF1 can enjoy good health and academic success, but many have special needs— especially in a school environment. Proper attention to these needs can dramatically increase the chances that children with NF1 will do well, both in school and in later life. This guide will help educators and professionals gain knowledge about the disorder to make a significant difference in the lives of children by providing early intervention when and if needed.

Individual Education Plans: A Guide for Parents

Many parents are not sure what to expect at an Individual Education Plan (IEP) meeting. When they meet school staff on behalf of their child, they may feel vulnerable or even frightened. Often, they don’t know what to do and are not clear about their role in the process. This guide, will help you understand how an IEP meeting works and how you and your child, working together with the school, can get the most out of this process for the benefit of your child.

Know Your Rights: A Handbook for Parents/Guardians of Children with Learning Disabilities and/or Attention Deficit Disorder

The purpose of this booklet is to provide parents of children with Learning Disabilities (LD) and/or Attention Deficit Disorder (AD/HD), with information that will help them to be effective advocates for their child.

Talking to Your Child about NF1

Talking with your children about Neurofibromatosis is a challenge for most parents. Many people feel ill-equipped to tackle this task successfully. Knowing what to say and when to say it needs preparation and some thought. There is no single approach that is the “right” way or the “wrong” way.  This factsheet points out some of the things you will want to think about.

NF Buddies: A Child’s Perspective

Here is a alternate link:

NF Buddies: A Child's Perspective

NF Buddies is a children’s book, explaining Neurofibromatosis as a child would – very matter of fact and full of hope. It has photos on every page, showing children a little of what they might expect after being diagnosed with NF. This book isn’t just for children though. It is a great way to introduce others to NF.

Just for Teens Living With NF1

This booklet was created just for teens because knowledge is power – knowledge of the disorder, knowledge of the available resources and  knowledge of how you can take charge of your health and your life.

NF2 Resources

Advocure- Advocates for NF2

AdvocureNF2 is dedicated to advocacy and to strengthening efforts that will expedite research contributing towards systemic therapies to treat and eventually cure NF2.

NF2 Crew (rename from: Support for Neurofibromatosis Type 2)

The NF2 Crew is one of the largest NF2 support groups in existence, with hundreds of members spanning the globe. They connect through a variety of Internet-based communication mediums, but mainly Facebook.


NF2 Information and Services is dedicated to helping people with NF2 who are looking to learn and find the information and services needed to live better, feel better and do better as they deal with their NF2 issues.

NF2 BioSolutions

NF2 BioSolutions is a new non-profit organization. They seek to cure neurofibromatosis type 2 (NF2) by raising funds to support research labs working specifically on gene therapy and immunotherapy. 

Other Links

Apps for Kids with Special Needs and Learning Differences.

This site has a curated collection of apps, arranged by challenge area and difficulty level. For kids with special needs, the right tools can make a huge difference. Games, apps, and devices offer access, information, and inclusion to kids with learning differences, autism, vision and hearing loss, and more. Learn how to configure your child's device, boost your kid's social skills, and determine the best digital media for your family's needs.

Learning Disabilities Association of BC

LDABC’s mandate is to be the Provincial network and voice for persons with Learning Disabilities (LD) and those who support them. The association provides information and resources to ensure the full participation of children, youth and adults with LD in today’s society.

Self-Management BC

Persons with chronic health conditions and family members can participate in self-management programs offered in communities throughout BC at no cost. These are evidence-based programs which provide information, teach practical skills and give people the confidence to manage their health.


Learning Disabilities Association of BC

Rare Disease Foundation- Provincial Parent to Parent Network

Brain Tumour Foundation- Brain Wave Program
Support for families on a journey with a paediatric brain tumour

My CarePath
A site created by BC’s Children’s Hospital Complex Plain Service and Pain BC

Shriners Hospitals Canada
Shriners Hospitals for Children has a mission to provide the highest quality care to children with neuromusculoskeletal conditions, burn injuries and other special healthcare needs within a compassionate, family-centered and collaborative care environment. They have helped many NF families.

Canadian Health Advocates Inc.
Canadian Health Advocates Inc. (CHAI) has a growing network of health advocates across Canada. Their advocates have years of experience in different health and wellness backgrounds, and have developed a deep understanding of the best way to navigate the healthcare system.

Anxiety Canada
Anxiety is one of the most common mental health concerns for children and adults, affecting upwards of 20% of children and adolescents over their lifespan. Everyone experiences anxiety sometimes. Patients with neurofibromatosis reported significantly more symptoms of depression and anxiety.

Anxiety Canada is devoted to providing accessible, science-based anxiety relief to help you live the life you want. They provide free and affordable resources for those struggling with anxiety and anxiety disorders. Visit their website to learn more about their programs, tools, and resources.