Great Article from the Nurse Practitioner
Follow this link to a great article about Primary Care for Patients with Neurofibromatosis 1
A Parent's Guide to the Learning Disabilities Associated with Neurofibromatosis Type 1
This guide is designed to act as a resource for parents of children with both NF1 and learning disabilities – at all school ages. Whether your child is just entering kindergarten, or is into his/her high school years, you will find relevant material to address his/her educational needs in this guide.
Youth Guide to Understanding Neurofibromatosis
This 13 page resource was created with the help of young people and answers frequently asked questions about NF. This brochure will assist parents and youth alike in better understanding living with NF.
NF - Kids to Kids Video
This video features kids 9 to 19 sharing their experiences on living with NF. This video is a must see for children who are newly diagnosed with NF and for children experiencing new symptoms.
Click here for more information and and order form.
NF Buddies Book
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.
If you would like
to see what “NF Buddies” looks like,
click here. You can read a few pages of the book.
If you would like to buy a copy, you can find out more by clicking here.
Information Pamphlets - The Children's Tumor Foundation
Questions & Answers
The pamphlet provides answers to the most commonly asked
questions about NF.
Neurofibromatosis Type One: A Guide for Educators
This 12 page booklet is written in question and answer format and provides concise and practical information and recommendations about the cognitive, behavioral and physical manifestations of the disorder. It was developed by Dr. Bruce Korf, a neurologist at Harvard Medical School.
Living with
NF Type 1: A Guide for Adults
This pamphlet was written to provide information specifically for adults with
Neurofibromatosis Type 1. It was written by Linda Piersall, M.S., David H.
Gutmann, M.D., Ph.D., and Rosalie ferner, M.D., F.R.C.P. It is published by The
Children's Tumor Foundation.
Facing Neurofibromatosis: A Guide for
Teens
This booklet has been written to explain what is known about neurofibromatosis,
and what can be done to help deal with it. It was developed by Dr. Bruce Korf,
Gretchen Schneider, M.S. and Diana Platt Frenkel of the NF Program at Children's
Hospital, Boston.
Achieving in Spite of...A Booklet on
Learning Disabilities
Designed for use by parents, teachers and health professionals, this 34-page
booklet includes information on what learning disabilities are and what to do
about them.
Neurofibromatosis: Information for
Patients and Families
This booklet is intended to answer your questions about neurofibromatosis (NF).
It is published by The Children's Tumor Foundation in response to multitudinous
requests from individuals with NF, their families, and the professionals who
care for them. It was written by the Foundation's Medical Director, Dr. Allan E.
Rubenstein, and its past Executive Director, Felice Yahr, MS.
The Child with Neurofibromatosis Type 1
This brochure is dedicated to the families who live with neurofibromatosis, and
their friends who help provide support and encouragement. It is the purpose of
this brochure to attempt to place mild or early neurofibromatosis in
perspective. To some extent, neurofibromatosis is an unpredictable condition and
uncertainty is inevitable. It is hoped, however, that access to accurate medical
information will make this uncertainty easier to live with and understand.
NF2: Information for Patients &
Families
This pamphlet was written to provide information on Neurofibromatosis Type 2
(also called bilateral acoustic neurofibromatosis or central neurofibromatosis).
It was written by Dr. Mia MacCollin, Dr. M. Priscilla Short and Catherine Bove,
R.N. Med. of Massachusetts General Hospital. It is published by The Children's
Tumor Foundation.
Schwannomatosis
Schwannomatosis shares many features of the neurofibromatoses, and may be viewed
as another form of neurofibromatosis. Much less is known about schwannomatosis
than about NF1 and NF2, however. Current evidence suggests that schwannomatosis
is associated with alteration of a gene that is distinct from the NF1 and NF2
genes....
I'm Not Sick, Just a Bit Unwell: Life with Neurofibromatosis
by Yvonne Foong
The book details her life with Neurofibromatosis Type 2. She hopes to empower the less-fortunate to live with dignity and fight for what they deserve, than to settle with sub-standards of an ill-informed society.
Thirty Cats
by Dina Roberts
This fiction book tells the story of a young girl with NF and the emotional struggles she faces. It can be found on www.amazon.com.