General Information

Family Support Network of North Carolina
http://fsnnc.med.unc.edu/

Kids Health http://www.kidshealth.org/kid/
Kids Health En Espanol http://www.kidshealth.org/kid/en_espanol/index.html

Prescription Drug Patient Assistance Programs

http://www.nami.org/Template.cfm?section=about_medications&Template=/ContentManagement/contentDisplay.cfm&ContentID=19169


Asthma

American Academy of Allergy Asthma and Immunology
Tips in English and Spanish
http://www.aaaai.org/patients/publicedmat/tips/#English
http://www.aaaai.org/espanol/tips/
Learn about Asthma and what to do about it from the Asthma Coalition of New Jersey
http://www.pacnj.org/docs/PACNJ%20Final%20Asthma%20Brochure.pdf
Asthma and Allergy Foundation
http://www.aafa.org/

Asthma and Schools
Tools for Schools
http://www.schoolasthmaallergy.com/2002-2003/sections/toolkit/tools_nurses/index.html

Schering Key– Useful Tools for School Nurses
Http://www.SchoolAsthmaAllergy.com   

Useful Asthma Management Tools for School Nurses
Environmental Protection Agency-Managing Asthma in the School Environment with information about the EPA program - "IAQ
Http://www.epa.gov/iaq/schools/index.html

National Institute of Health, National Heart, Lung, Blood Institute: Asthma Awareness
Http://www.nhlbi.nih.gov/health/prof/lung/asthma/school/index.htm
H.R. 2023 - "Asthmatic School-children's Treatment and Health Management Act of 2004" http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname=108_cong_bills&docid=f:h2023enr.txt.pdf
(An Act to give preference regarding States that require schools to allow students to self administer medication to treat the student's asthma or anaphylaxis and for other purposes)
 

Brain Injury
Brain Injury Association of NC  http://www.bianc.net/index.htm


Pediatric Traumatic Brain Injury: A review of pertinent issues from
April 2005 Pediatric Rehabilitaion Journal
http://www.bianc.net/docs/pedrehab_savage_lash.pdf

LA Publishing- publisher for BIA USA
www.lapublishing.com

Brain Injury Partners: Navigating the School System
http://free.braininjurypartners.com/

An interactive, multi-media interevention, is now available on-line free of charge.  The easy-to-use website is designed to give parents of school-aged children with a brain injury the skills they need to become successful advocates.


Burns
Cool the Burn: a site for children touched by a burn
www.cooltheburn.com

BurnSurvivor.org  is about support, education, prevention and motivation... the non-medical and more emotional side of burn care. BurnSurvivor.org will arm burn survivors with tools necessary to be successful in life.
Excellent guide to burn camps.
www.BurnSurvivor.org

The Great Sparky the Fire Dog
Fire prevention and safety for kids and teens.
www.sparky.org

Phoenix Society for Burn Survivors, Inc.
Support group for burn survivors.
www.phoenix-society.org
School Reentry
 http://www.phoenix-society.org/programs/schoolreentry/

Burn Institute
Dedicated to reducing burn injuries and deaths. Includes teaching materials.
www.burninstitute.org



Cancer & Blood Disorders


Pediatric Cancer and Blood Disorders Links on information and camps from Childrens Healthcare of Atlanta
http://www.choa.org/default.aspx?id=4304

National Children's Cancer Society
www.children-cancer.com

Candlelighters Childhood Cancer Foundation
Information on aspects of childhood cancer for children, parents, survivors, bereaved families, health professionals, and educators.
www.candlelighters.org  

Wigs for Kids
http://www.wigsforkids.org/

Hemophilia

What is hemophilia?
http://www.hemosocal.org/bleeding.html

Cerebral Palsy

What is CP?

http://www.ninds.nih.gov/disorders/cerebral_palsy/cerebral_palsy.htm

Cystic Fibrosis
SCHOLARSHIPS http://www.cfscholarships.com/

CF Foundation
http://www.cff.org/home/
CFF Carolinas Chapter http://www.cff.org/Chapters/carolinas/
Cystic Fibrosis- A Guide for patient and family  by David Orenstein

Diabetes

General Information
http://www.childrenwithdiabetes.com/kids/

What is Diabetes
http://www.childrensdiabetesfdn.org/educ/whatis.html
Sending your diabetic child to school
http://www.childrensdiabetesfdn.org/educ/sclhealth.html

 Children and Teens with Diabetes
 http://www.lifeclinic.com/focus/diabetes/childrenteen_main.asp

National Diabetes Education Program- Youth 

http://www.ndep.nih.gov/diabetes/youth/youth_FS.htm

Juvenile Diabetes Foundation
http://www.jdf.org/

American Diabetes Association for Parents and Kids
http://www.diabetes.org/for-parents-and-kids.jsp

Disabilities
Exceptional Children's Assistance Center
A North Carolina-based information center for parents of children with disabilities
Includes links for ADD, mental retardation, mental health, hearing impaired, learning disabilities, Down Syndrome, NC and national agencies
http://www.ecac-parentcenter.org

TelAbility: Enhancing the Lives of Children with Disabilities
Community oriented, interdisciplinary program that uses telecommunications to improve the lives of children with disabilities.
http://www.telability.org

Family Support Network of North Carolina
Summer camp listings, links to NC resources, disability resources
http://fsnnc.med.unc.edu

Don Johnston-Learning Intervention Resources
For struggling students and students with disabilities
Includes an interactive discussion forum
http://www.donjohnston.com
 

 Epilepsy
A Parent's Guide to Epilepsy
http://www.epilepsy.org.uk/info/parents.html
Epilepsy and Education
http://www.epilepsy.org.uk/info/education.html
Epilepsy Foundation
http://www.epilepsyfoundation.org/
Intro to Epilepsy
http://www.epilepsyfoundation.org/about/
Epilepsy and Education
http://www.epilepsyfoundation.org/answerplace/Social/education/

Gastrointestinal Disorders

Liver Transplant - focus : post transplant liver, liver/kidney, liver/small bowel
Children's Liver Association for  Support Services 

http://www.classkids.org

Transplant Living- After the Transplant
http://www.transplantliving.org/afterthetransplant/default.aspx

Crohns and Colitis Foundation of America
http://www.ccfa.org/chapters/carolinas/

CCFA Information Resource Center http://www.ccfa.org/irc?LMI=2 

CCFA Kids and Teens
http://www.ccfa.org/kidsteens/?LMI=8

 Genetic Disorders

(e.g. Downs Syndrome, Fragile X, Turners Syndrome)

Your Genes Your Health- Guide to Genetic Disorders

http://www.yourgenesyourhealth.org (select specific disorder of interest for reviewing)

National Institute of Neurological Disorders
http://www.ninds.nih.gov/disorders (select specific disorder of interest for reviewing)

Immunological Deficiencies
Links from UVA health system on Immune Deficiencies
http://www.healthsystem.virginia.edu/uvahealth/peds_allergy/oidhub.cfm
Severe Combined Immunodeficiency
http://www.scid.net/
More information on Immunology 

Heart Disease

Pediatric Heart Conditions and Problems 

http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies ( select from the list which condition you would like to review)

Living with Congenital Heart Disease
http://www.childrenscentralcal.org/content.asp?id=971&parent=1&groupid=G0044

JRA- Juvenile Rheumatoid Arthritis 

General Info on JRA 

http://www.kidshealth.org/parent/medical/arthritis/jra.html   

How is it treated?  

http://www.arthritis.org/juvenile-arthritis.php 

Kidney Disease
National Kidney & Urologic Diseases Information Clearinghouse
Includes information about childhood kidney disease
kidney.niddk.nih.gov

National Kidney Foundation
www.kidney.org/patients

YakTalk: Young Adult Kidney Talk
An e-mail group
home.nycap.rr.com/jazzer/yaktalk

Kidney Disease 

 http://www.kidney.org/kidneyDisease/

Overview of Kidney Diseases in Children 

http://kidney.niddk.nih.gov/kudiseases/pubs/childkidneydiseases/overview/

 

Rare Disorders 

National Organization for Rare Disorders, Inc. (NORD)
PO Box 1968, Danbury, CT 06813
http://www.rarediseases.org/