Resource Links

Council for Children & Adolescents
with Chronic Health Conditions

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.

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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.

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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)

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LEGISLATIVE PROCESSES
(pending legislation and new laws)

 New Hampshire Senate

 New Hampshire House

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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.

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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.

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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.

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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: [email protected]

 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.

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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

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TRANSITION SERVICES

 STAR Program – Steps Toward Adult Responsibility

 New Hampshire Vocational Rehabilitation