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RESOURCE
LINKS
Links to third party web
sites are provided to allow CCACHC users easy access to potential sources
of additional information. They are not intended as an endorsement of the
third-party web sites or of organizations that maintain those web sites. The
listed links have been selected because the organizations maintaining those web
sites are active in areas that may be of interest of CCACHC users. CCACHC
has not reviewed the linked web sites to determine the accuracy of the
information included in those web sites.
The
information and resources on these pages are for educational purposes only. The
Council for Children and Adolescents with Chronic Health Conditions is not
engaged in rendering medical advice or professional services. The information
provided through this web site should not be used for diagnosing or treating a
health problem or a disease. It is not a substitute for professional care. If
you have health related questions you should consult your health care provider.
the
inclusion of any resource or link in these pages does not imply endorsement. As
information changes rapidly, please check with each sponsoring organization as
to whether the information you are receiving on their web site is current.
GENERAL
WEB SITES
Alliance for Assistive Technology, Education and Community Health (ATECH)
American
Diabetes Association
The American Diabetes Association
is the nation's leading nonprofit health organization providing diabetes
research, information and advocacy.
American
Epilepsy Society
The American Epilepsy Society
promotes research and education for professionals dedicated to the prevention,
treatment and cure of Epilepsy.
American
Heart Association
The American Heart Association is a
national voluntary health agency whose mission is to reduce disability and death
from cardiovascular diseases and stroke.
American Juvenile Arthritis Organization
The Arthritis
Foundation is the only national not-for-profit organization that supports the
more than 100 types of arthritis and related conditions with advocacy, programs,
services and research.
Arthritis
Foundation
The Arthritis
Foundation is the only national not-for-profit organization that supports the
more than 100 types of arthritis and related conditions with advocacy, programs,
services and research.
Asthma
& Allergies Foundation of America
AAFA, a not-for-profit organization
founded in 1953, provides practical information, community based services,
support and referrals through a national network of chapters and educational
support groups.
AsthmaNow
Asthma affects a growing number of people in New Hampshire. The AsthmaNow website brings together information and resources for everyone with an interest in asthma.
Brain
Injury Association of NH
The Brain Injury Association of New
Hampshire is a private, non-profit, family and consumer run organization
representing over 5000 New Hampshire residents with acquired brain disorders and
stroke.
Children Living with Inherited Metabolic Diseases
A
national umbrella organization working on behalf of children, young people and
families affected by metabolic disease.
Chromosome Deletion Outreach, Inc.
A non-profit agency providing information & support for
Families and Professionals affected by
Chromosome Deletions, Trisomies, Inversions, Translocations and Rings.
Crohn's
Disease Crohn's & Colitis Foundation of America (CCFA)
CCFA's mission is to cure
and prevent Crohn's disease and ulcerative colitis through research, and to
improve the quality of life of children and adults affected by these digestive
diseases through education and support.
Cystic
Fibrosis Foundation
The mission of the Cystic Fibrosis
Foundation is to assure the development of the means to cure and control cystic
fibrosis and to improve the quality of life for those with the disease.
Food
Allergy & Anaphylaxis Network (FAAN)
FAAN's mission is to increase public awareness about food allergies and anaphylaxis (a
severe, life-threatening reaction), to provide education, and to advance
research on behalf of all of those affected by food allergies.
Juvenile Diabetes Foundation
JDRF is the world’s leading nonprofit,
nongovernmental funder of diabetes research.
Leukemia and Lymphoma Society
The Society's mission is to cure leukemia,
lymphoma, Hodgkin's disease and myeloma, and to improve the quality of life of
patients and their families.
March
of Dimes
March of Dimes researchers,
volunteers, educators, outreach workers and advocates work together to give all
babies a fighting chance against the threats to their health: prematurity, birth
defects, low birthweight.
MUMS
A national
Parent-to-Parent organization for parents or care providers of a child with any
disability, rare or not so rare disorder, chromosomal abnormality or health
condition.
Muscular
Dystrophy Association
The Muscular Dystrophy Association
is a source for news and information about neuromuscular diseases, MDA research
and services for adults and children with neuromuscular diseases and their
families.
National
Association of People with AIDS
NAPWA advocates on behalf of
all people living with HIV and AIDS in order to end the pandemic and the human
suffering caused by HIV/AIDS.
National
Children's Cancer Society
The National Children's
Cancer Society (N.C.C.S.) is a non-profit tax exempt organization whose mission
is to provide direct financial support to children with cancer and their
families, for expenses related to cancer treatment.
National Hemophilia Foundation
NHF has a national presence, chapters throughout the
country, and an intricate communications network bringing healthcare
professionals and consumers the latest bleeding disorders news.
National Kidney Foundation
The National Kidney Foundation, Inc., a major
voluntary health organization, seeks to prevent kidney and urinary tract
diseases, improve the health and well-being of individuals and families affected
by these diseases, and increase the availability of all organs for
transplantation.
National
Neurofibromastosis Foundation
The National Neurofibromatosis Foundation, Inc. (NNFF)
is a non-profit 501(c)(3) medical foundation, dedicated to improving the health
and well being of individuals and families affected by the neurofibromatoses
(NF).
National
Pediatric AIDS Network
NPAN is a resource for information on children and
adolescents with HIV/AIDS.
Nevus
Organization
Nevus Outreach is a voluntary
health organization formed in 1997 by parents frustrated over the lack of
medical knowledge and treatment for people with Giant Congenital Nevi and
related disorders, such as Neurocutaneous Melanosis. Our goals are to improve public awareness, assist in patient advocacy, and promote
medical research.
New Hampshire Lung Association
PKU
National PKU News is a non-profit organization
located in Seattle, Washington. It is dedicated to providing up-to-date,
accurate news and information to families and professionals dealing with
phenylketonuria.
S.O.F.T. Support
Organization for Trisomy
S.O.F.T. is a nonprofit volunteer organization
offering support for parents who have had a child with a chromesome disorder,
and education to familes and professionals interested in the care of these
children.
Sickle Cell Disease Association of America, Inc.
The Sickle Cell Disease
Association of America assists member organizations and the public at large
through education, advocacy, and other initiatives which promote awareness and
support for sickle cell programs and patients.
Spina
Bifida Association
The
Mission of the Spina Bifida Association of America is to promote the
prevention of spina bifida and to enhance the lives of all affected.
ADVOCACY GROUPS
Children's Alliance of New
Hampshire
The Children's Alliance of
New Hampshire is a statewide advocacy organization for children -- we work to
give children a voice at all levels of state and local decision making so that
New Hampshire can become one of the best places anywhere to raise a child, a
place where every child is valued and no child is left behind.
Children's Defense Fund
The mission of the Children's Defense Fund is to Leave No Child
Behind® and to ensure every child a healthy start, a head start,
fair start, a safe start, and a moral start in life and successful passage to adulthood with the help of caring families and communities.
NH Governor's Committee on Disability
PACER Center
Parent Advocacy Coalition for
Educational Rights
The
mission of PACER Center is to expand opportunities and enhance the quality of
life of children and young adults with disabilities and their families, based on
the concept of parents helping parents.
INSURANCE
INFORMATION
New
Hampshire Insurance Department
The of the NHID is to promote and
protect the public good by ensuring the existence of a safe and competitive
insurance marketplace through the development and enforcement of the insurance
laws of the State of New Hampshire.
New Hampshire Insurance Laws Pertaining to Chronic Health Conditions
Proposed safeguards to maintain Medicaid Managed Care
(pdf)
LEGISLATIVE PROCESSES
(pending legislation and new laws)
New Hampshire Senate
New Hampshire House
LIBRARY
& REFERENCE MATERIALS
Allergy,
Asthma & Immunology Online
An information and news service for patients, parents of patients, the news
media, and purchasers of group health care programs.
Dartmouth Medical School Library
The Libraries' mission is to
provide health and life sciences information resources and services that support
research and scholarship, teaching, and patient-care activities of Dartmouth
Medical School, the Dartmouth-Hitchcock Medical Center, and Dartmouth College.
The Family Resource Connection
The
FRC is
a special program of the New Hampshire State Library providing information and
materials about all aspects of raising, caring for and educating children. We
have information available free of charge to New Hampshire residents on
parenting concerns, child development, child care, special needs, education,
disabilities, health issues, and other subjects of interest to parents and
caretakers.
Family Village
This site
includes informational resources on specific diagnoses, communication
connections, adaptive products and technology, adaptive recreational activities,
education, worship, health issues, disability-related media and literature, and
much, much more!
Johns
Hopkins School of Public Health
The National Policy Center
for Children With Special Health Care Needs, established through a cooperative
agreement with the Maternal and Child Health Bureau, HRSA, and DHHS, promotes
comprehensive, family-centered systems of care for children with special health
care needs and their families.
New Hampshire Web page
addresses by
Library name
Pediatric database of 550-childhood diseases
This database contains
descriptions of over 550 childhood illnesses and has been on the Internet since
November 15, 1995.
MEDICAL &
NURSING ASSOCIATIONS
The New Hampshire Pediatric
Society
The NHPS advocates for your patients
and their families-and for YOU.
New
Hampshire School Nurse Association
Building bridges to healthy children in New Hampshire.
REFERRAL &
INFORMATION SERVICES
New Hampshire Family Voices
Parents having children
with special health care needs, multiple disabilities and mental health
conditions, run New Hampshire Family Voices.
New
Hampshire Help Line
The
NH Help Line's Resource Database contains comprehensive information about social
service agencies and programs throughout the state of New Hampshire.
Parent
Information Center
The PIC provides
information, support, technical assistance and training to parents, family
members, professionals and other appropriate individuals.
Parent to Parent of New Hampshire
Parent to Parent is an organization for
parents of children with disabilities offering emotional support and
information.
New Hampshire Partners in Health (PIH) Project
The New Hampshire Partners in Health (PIH) Project is a comprehensive,
community-based model designed to address the needs of children with chronic
health conditions and their families. PIH works with both individuals and
agencies that influence the family's social, educational and medical
surroundings.
SCHOOL
INFORMATION
New Hampshire Department of Education
Section 504 Policy and Procedures
Who to contact for further information:
Robert Wells, Ph.D.
Education Consultant
Bureau of Special Education
New Hampshire State Department of Education
101 Pleasant Street
Concord, NH 03301-3860
Tel: 603-271-1536
Fax: 603-271-1953
Email: rwells@ed.state.nh.us
Asthma and Schools
Asthma and
Schools consolidates information about asthma-related resources for school
personnel working with grades K-12. The simple, searchable database links
to educational materials, medical information, websites, and other resources
useful for anyone who works in a school serving children and youth.
Children’s School Advocacy (private for profit)
Educational Planning for students with
chronic health conditions.
Laws pertaining to school rights and diabetes
Children with diabetes sometimes
face problems in obtaining the care they need in schools and day
care centers. This brochure will help you understand the rights of children
with diabetes and what you can do to make sure your child receives fair
treatment.
National Association of School Boards of Education
The National Association of State Boards of Education (NASBE) is
a non-profit association that represents state and territorial boards of
education.
School Based Health Centers
The Center for Health and Health Care in Schools (CHHCS) The Center for Health and Health Care in Schools (CHHCS) was established to explore ways to strengthen the well being of children and youth through effective health programs and health care services in schools
When chronic illness goes to school
Joan Fleitas, Ed.D., R.N., Associate Professor of Nursing at Fairfield
University provides this site with information specific to children, teenagers,
and adults.
STATE AGENCIES
Asthma Control Program
Diabetes
Education Department, Bureau of Special Education
Governor’s Commission on Disabilities
Healthy Kids
Interpreter Services
Medicaid Program
Special Medical Services Bureau
TRANSITION SERVICES
STAR Program - Steps Toward Adult Responsibility
New Hampshire Vocational Rehabilitation
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