Need help or resources?

Resources to help families
These links will take you to other websites for more information.

Conditions

National Attention Deficit Disorder Association The Attention Deficit Disorder Association provides information, resources and networking opportunities to help adults with Attention Deficit Hyperactivity Disorder lead better lives.

Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD)

Autism -pdd Nos Helping Families face Autism

Center on Positive Behavioral Interventions and Supports PBIS improves social, emotional and academic outcomes for all students, including students with disabilities and students from underrepresented groups.

Autism Society of America

National Stuttering Association

Stuttering Foundation

     VISION and HEARING

American Council of the Blind

American Foundation for the Blind (AFB) We advocate for better policies that promote accessibility and ensure equality and opportunity for people who are blind or visually impaired, creating a culture of inclusion at work, at school, and in our communities.

Blind Children’s Center -Based in Southern California

American Printing House for the blind. “The world’s largest source for adapted educational and daily living products since 1850” www.aph.org

Learning, sight and sound made easier. Catalog for products for the visually impaired and Hard of Hearing.

National Federation of the Blind has a free Braille book program as well as other useful information

National Library Service for the Blind and Physically Handicapped National Library Service (NLS) is a free braille and talking book library service for people with temporary or permanent low vision, blindness, or a physical disability that prevents them from reading or holding the printed page.

Learning Ally Audio book resources for schools and students

National Information Clearinghouse on Children who are Deaf-Blind.

Laurent Clerc National Deaf Education Center Information and resources for families and professionals to meet the needs of children who are deaf or hard of hearing.

Alexander Graham Bell Association for the Deaf and Hard of Hearing

National Institute on Deafness and Other Communication Disorders at NIH

American Society for Deaf Children The American Society for Deaf Children (ASDC) is committed to empowering diverse families with deaf* children and youth by embracing full access to language-rich environments through mentoring, advocacy, resources, and collaborative networks.

American Speech-Language Hearing Association (ASHA) Making effective communication, a human right, accessible and achievable for all.

National Association of the Deaf The National Association of the Deaf (NAD) is the nation’s premier civil rights organization of, by and for deaf and hard of hearing individuals in the United States of America.

Registry of Interpreters for the Deaf The Registry of Interpreters for the Deaf, Inc. (RID), a national membership organization, plays a leading role in advocating for excellence in the delivery of interpretation and transliteration services between people who use sign language and people who use spoken language.

Language Line Solutions  Providing Professional Interpreting and Translation Services to Enable Communication and Empower Relationships- Offers Free webinars

Hearing Loss Association of America The Mission of HLAA is to open the world of communication to people with hearing loss by providing information, education, support and advocacy.

National Organization on Fetal Alcohol Syndromes (NOFAS)

National Down Syndrome Society

National Organization on Disability (NOD) The National Organization on Disability (NOD) is a private, non-profit organization that promotes the full participation and contributions of America’s 57 million people with disabilities in all aspects of life.

Education/Learn

Pacer Center -Information center based in MN. Special Education overview

Individuals with Disabilities Education Act 

Council for Parents, Attorneys and Advocates. COPAA’s mission is to protect and enforce the legal and civil rights of students with disabilities and their families.  Their primary goal is to secure high quality educational services and to promote excellence in advocacy.

National Center on Educational Outcomes NCEO has led the way in advocating for appropriate testing access and accommodations for students with disabilities.

National Center for Education Statistics is (NCES) is the primary federal entity for collecting and analyzing data related to education in the U.S. and other nations.

CCSSO (Council of Chief of State School Officers) We are committed to ensuring that all students participating in our public education system — regardless of background — graduate prepared for college, careers, and life.

Education Commission of the States (ECS) continues to partner with education policy leaders to address issues by sharing resources and expertise.

Great Schools Partnerships Develop and advocate for sustainable educational policies, effective school leadership, proven instructional practices, and student-centered learning models built on strong community connections.

ERIC Educational Resources Information Center. Data base of educational articles

Educator’s Reference Desk Access lesson plans, links to online education information, and archive responses.

The Regional Educational Laboratory Programs 10 Regional labs funded by the US Department of Education providing information about “promising programs”

NASBE (National Association of School Boards of Education) develops, supports, and empowers citizen leaders on state boards of education to strengthen public education systems so students of all backgrounds and circumstances are prepared to succeed in school, work, and life.

HEALTH Resource Center  is a web-based clearinghouse that serves as an information exchange of educational resources, support services and opportunities. The HEATH Resource Center gathers, develops and disseminates information in the form of resource papers, fact sheets, website directories, newsletters, and resource materials.

CADRE (Consortium for Appropriate Dispute Resolution in Special Education) CADRE creates products and delivers services that are high quality, relevant, and useful to the field of dispute resolution in special education and early intervention.

Closing the Gap Empowering educators, professionals and parents alike, with the latest resources and tools they need to deepen their assistive technology knowledge, best practices and implementation strategies.

Council for Exceptional Children (CEC)  is a professional association of educators dedicated to advancing the success of children with exceptionalities.

National Association of Private Special Education Centers (NAPSEC)  member programs provide educational therapeutic services to both publicly and privately placed individuals that are not able to be successfully educated in the regular education environment.

National Resource Center for Paraeducators in Education and Related Services

Understood For Learning and Attention Issues 15 nonprofit organizations have joined forces to support parents of the one in five children with learning and attention issues throughout their journey.

National Early Childhood Technical Assistance Center.

Head Start Bureau The Head Start and Early Head Start programs are administered by the Office of Head Start, within the Administration for Children and Families (ACF), U.S. Department of Health and Human Services (HHS).

Zero to Three (National Center for Infants, Toddlers and Families) At ZERO TO THREE we envision a society that has the knowledge and will to support all infants and toddlers in reaching their full potential.

The Office of Special Education Programs is dedicated to improving results for infants, toddlers, children and youth with disabilities ages birth through 21 by providing leadership and financial support to assist states and local districts.

LDOnline The educators’ guide to learning disabilities and ADHD

The ARC  is the largest national community-based organization advocating for and with people with intellectual and developmental disabilities (I/DD) and serving them and their families.

Learning Disabilities Association of America (LDA)

National Center for Learning Disabilities (NCLD) The mission of NCLD is to improve the lives of the 1 in 5 children and adults nationwide with learning and attention issues—by empowering parents and young adults, transforming schools and advocating for equal rights and opportunities.

Nonverbal Learning Disorder Project The NVLD Project is dedicated to raising awareness, building support, and creating helpful solutions for children, adolescents, and adults with Non-Verbal Learning Disability.

International Dyslexia Association 

Little People of America – National Headquarters

Insurance/Health Care

Families USA (The Voice for Health Care Consumers) Families USA, a leading national voice for health care consumers, is dedicated to the achievement of high-quality, affordable health care and improved health for all.
Information on Medicare, Medicaid, Children’s Health Insurance Plan (CHIP), and managed care.

The Centers for Medicare & Medicaid Services Federal government site with information covering Medicare and Medicaid services,

Insure Kids Now Site to fin health care insurance for uninsured children

AMA Doctor Finder is provided by the American Medical Association. It is a database of virtually every licensed physician in the United States.

Healthcare Hospitality Network  Can help patients and their families find lodging and other supportive services when confronted with medical emergencies.

Healthfinder connects you with a ranges of health related resources. Spanish version

The American Academy of Family Physicians provides this site of “health information for the whole family”

Clinical Trials  is a database of privately and publicly funded clinical studies conducted around the world.

Government

New Hampshire State Government

Social Security Administration

Law

ADA American with Disabilities Act

Individuals with Disabilities Education Act 

Wrightslaw website on all aspects of the IEP and 504 laws, procedures and proven methods. Includes seminars all over the country

National Disability Rights Network The National Disability Rights Network works in Washington, DC on behalf of the Protection and Advocacy Systems (P&As) and Client Assistance Programs (CAPs), the nation’s largest providers of legal advocacy services for people with disabilities

Disabilities Rights Center- NH We are New Hampshire’s designated Protection and Advocacy agency. We are authorized by federal statute “to pursue legal, administrative and other appropriate remedies” on behalf of individuals with disabilities. We are a statewide organization independent from state government or service providers.

Medical Conditions

National Heart, Lung, and Blood Institute

American Liver Foundation

American Lung Association

American Heart Association – National Center

Brain Injury Association of America

American Brain Tumor Association

National Brain Tumor Foundation

National Cancer Institute

Leukemia & Lymphoma Society

National Institute of Diabetes and Digestive and Kidney Diseases

American Diabetes Association

FACES: The National Craniofacial Association

Tuberous Sclerosis Alliance

Congenital Heart Defects

Kidney Corner Kidney Corner is an Internet community dedicated to pediatric kidney disease.

United Mitochondrial Disease Foundation

National Institutes of Health

National Institute of Allergy and Infectious Diseases

NORD (National Organization for Rare Disorders)

Foundation for Icthyosis and Related Skin Types

International Rett Syndrome Association

Genetic Alliance  For information on specific genetic conditions.

The Genetic and Rare Disease Information Center at NIH

National Institute of Neurological Disorders & Stroke

Angelman Syndrome Foundation

Asthma and Allergy Foundation of America

Children’s Craniofacial Association

Myalgic encephalomyelitis (ME) Chronic Fatigue  Syndrome (CFS)

National  Fibromyalgia & Chronic Pain Association

Crohn’s & Colitis Foundation of America

Human Growth Foundation Foundation for those with disorders of growth and growth hormones.

MAGIC Foundation (Major Aspects of Growth Disorders in Children)

Huntington’s Disease Society of America

Hyrdocephalus Association

Immune Deficiency Foundation

Lupus Foundation of America

March of Dimes

National Ataxia Foundation

National Fragile X Foundation

National Gaucher Foundation

Amputee Coalition of America National Limb Loss Information Center

National Lymphedema Network

National Multiple Sclerosis Society

Children’s Tumor Foundation -Neurofibromatosis

National Organization for Albinism and Hypopigmentation (NOAH)

National Reye’s Syndrome Foundation

National Scoliosis Foundation

National Sleep Foundation

United Spinal  Association

National Tay-Sachs and Allied Diseases Association

Osteogenesis Imperfecta Foundation

Prader-Willi Syndrome Association

Scleroderma Foundation

Spina Bifida Association

Tourette Syndrome Association

United Cerebral Palsy Association

Cerebral Palsy Guidance

United Leukosystrophy Foundation

Vestibular Disorders Association

Williams Syndrome Association

Epilepsy Foundation

American Association of Kidney Patients (AAKP)

Children’s Liver Disease Foundation

Cystic Fibrosis Foundation

Muscular Dystrophy Association (MDA)

Mitochondrial Disease Foundation

Medline Plus  Site of the US National Library of Medicine offers everything from an online medical encyclopedia to interactive tutorials for patients.

Aplastic Anemia & MDS International Foundation The Aplastic Anemia & MDS International Foundation is the world’s leading nonprofit health organization dedicated to supporting patients and families living with aplastic anemia, myelodysplastic syndrome (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and related bone marrow failure diseases.

Health Information Resource Database  Database of organizations and government offices that provide health information upon request.

Arthritis Foundation

Lung Cancer Center

Mental Health

Mental Health.org Resources to get help for mental health.
National Institute on Mental Health (NIMH)

National Center for School Mental Health, University of Maryland  This center maintains a library of resource materials and publications and a directory of school mental health programs.

Center on Positive Behavioral Interventions and Supports

Anxiety Disorders Association of America

Depression and Bipolar Support Alliance

National Federation of Families for Children’s Mental Health

Mental Help.Net

National Alliance for the Mentally (NAMI)

National Association for the Dually Diagnosed (NADD) An association for persons with developmental disabilities and mental health needs.

Obsessive Compulsive Foundation

Technology

AbleData   database for unbiased, comprehensive information on products, solutions and resources to improve productivity and ease life’s tasks.

Enabling Devices Exceptional products to help people with disabilities participate fully in the world.

AssistiveTech.net. The National Public Website on Assistive Technology

Center on Technology and Disability The Center is designed to increase the capacity of families and providers to advocate for, acquire, and implement effective assistive and instructional technology (AT/IT) practices, devices, and services.

RESNA Rehabilitation Engineering and Assistive Technology Society of North America– Consumer and public information about assistive technology programs.

US Society of Augmentative and Alternative Communication

Support

ARCH National Respite Network & Resource Center (respite locator service)

Pathways Awareness Foundation

Parents of Galactosemic Children  is a non-profit charitable organization that advocates for people with galactosemia and their families.

National Patient Air Transport Hotline

Make a Wish Foundation

High Hopes Foundation NH based

Dream Factory

Therapies/Recreation

Center on Positive Behavioral Interventions and Supports

National Rehabilitation Information Center  offers an online searchable database of resources

American Occupational Therapy Association (AOTA)

American Physical Therapy Association (APTA)

American Therapeutic Recreation Association National Center on Physical Activity and Disability www.ncpad.org/ Find a variety of recreation, leisure and fitness activities.

Special Olympics

Best Buddies International, Inc. Best Buddies is a nonprofit 501(c)(3) organization dedicated to establishing a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment and leadership development for people with intellectual and developmental disabilities (IDD).

Disabled Sports USA  Disabled Sports USA’s mission is to provide national leadership and opportunities for individuals with disabilities to develop independence, confidence, and fitness through participation in community sports, recreation, and educational programs
Sensory Processing Disorder Network Our goal at the Sensory Process Disorder Network is to help parents, therapists and anyone who is interested in learning more about this mental condition.

Book: The Out of Sync Child by Carol Stock-Kranowitz

Sensory Resources– Resources about sensory related topics
Heart Healthy Market  Source for low sodium foods

TASH (formerly the Association for Persons with Severe Handicaps)TASH is an international leader in disability advocacy.

National Center on Health, Physical Activity and Disability (NCHPAD)

Links

Over the years, CYCC has partnered with countless organizations in addressing the medical, social, and educational impacts of chronic health conditions on children and their families. Many of these organizations are listed here.

Breathe New Hampshire
Breathe New Hampshire is the state’s oldest nonprofit voluntary health agency. It was established in 1916, when a group of concerned New Hampshire residents organized to form the New Hampshire Tuberculosis Association. Today, as Breathe New Hampshire, the organization’s mission encompasses the challenges associated with: asthma management; keeping both indoor and outdoor air clean; nicotine addiction; chronic obstructive pulmonary disease; and other matters affecting healthy breathing.
Contact: Mary Ellen Hettinger Director of Public Relations and Communications, mhettinger@breathenh.org

Respiratory Therapy Overview – Learn how to be a become a respiratory therapist.

Mesothelioma 

Occupational Therapy Fundamentals -Learn how to become an occupational therapist.

Financial Aid Basics– Career resource center/financial aid for online colleges

Child Cancer Lifeline of New Hampshire
The Childhood Cancer Lifeline was founded in 1995 by a group of parents whose children had childhood cancer. Since its inception, the Childhood Cancer Lifeline has been a strictly volunteer organization dedicated to addressing the practical and emotional needs of New Hampshire families dealing with pediatric cancer. Today, its volunteers have expanded to include family members, friends, and other caring individuals.
Contactinfo@childhoodcancerlifeline.org, (603) 645-1489

New Hampshire Family Voices
Caring for children with special needs can be exhausting and complex. Parents and caregivers often struggle to find the resources and services their child needs. New Hampshire Family Voices’ goal is to help these families. New Hampshire Family Voices operates a family to family health and education center that features one-to-one phone assistance, educational materials, and a lending library.
Contactnhfv@yahoo.com, (603) 271-4525

New Hampshire Partners in Health
The New Hampshire Partners in Health Program helps families of children with a chronic health condition advocate, access resources, navigate systems, and build capacity to manage the chronic health condition of their child.
Contact: Heidi Petsold, (603) 271-4508

Arthritis Foundation, New Hampshire chapter
The Arthritis Foundation is the only national, not-for-profit organization that supports the more than 100 types of arthritis and related conditions. Founded in 1948, the Arthritis Foundation has multiple service points located throughout the country. The foundation helps people take control of arthritis by: providing public health education; pursuing public policy and legislation; and conducting evidence-based programs to improve the quality of life for those living with arthritis.
ContactMargaret Duffy

New Hampshire Healthy School Environments
The New Hampshire Healthy School Environments program helps school districts improve their indoor and outdoor environments, as well as the health of their students and staff. The program works with school districts and provides free assessment, training, technical assistance, and mentoring to address environmental and asthma management needs identified by schools.

Granite State FitKids
Granite State FitKids is a multi-week, interactive health awareness program. At the core of the program are lessons called Body Workshops, which discuss the body systems, the effects of tobacco, and the benefits of good nutrition and regular physical activity. Lessons are approximately 45 to 60 minutes in length and are designed to complement existing health education curriculum. The Body Workshops—conducted by Charles Cappetta, MD, FAAP, and his team of facilitators—are held at elementary schools throughout New Hampshire and Massachusetts.
ContactDr. Chuck Cappetta, (603) 577-4400

The Parent Information Center of New Hampshire
The mission of the Parent Information Center is to guide and encourage families in supporting the unique learning potential of their children, including children with disabilities. The Parent Information Center and its various grant programs address a variety of key issues in order to help parents support their children’s success in school and in life.
Contact: Michelle Lewis, Executive Director

NH Department of Education- Learner Support
New Hampshire aims to improve educational outcomes for all children, while meeting the unique needs of children and youth with disabilities.
ContactHeather Gage   (603) 271-5992

New Hampshire Pediatric Society
The New Hampshire Pediatric Society is the state chapter of the American Academy of Pediatrics.
ContactCatrina Watson, executive director, (603) 226-2432

Easter Seals New Hampshire
For more than 26 years, the National Health Council ranked Easter Seals first among its members for the percentage of program dollars spent on direct client services. Also, every penny raised stays in New Hampshire to benefit Granite State residents. Business New Hampshire magazine recently named Easter Seals NH the 2010 Non-Profit Business of the Decade. Easter Seals N.H. includes New Hampshire, Vermont, Maine, Rhode Island, New York, Coastal Fairfield County, and the Harbor Schools programs in Massachusetts. It is recognized as the most progressive and diverse Easter Seals nationally.
Contact: (603) 623-8863

New Hampshire Association for the Blind
The New Hampshire Association for the Blind was founded in 1912 by Emma Coolidge Weston of Hancock, N.H. For more than 98 years the mission has been to “advance the independence of persons who are blind and visually impaired.” The Association offers a complete range of specialized, professional vision rehabilitation services to help people with low vision or no vision live full, independent lives.
Contactservices@sightcenter.org, (603) 224-4039

New England Society of Allergy
The New England Society of Allergy is a non-profit organization of board certified allergists and immunologists in the six New England states and upstate New York. The New England Society of Allergy was founded in 1956 for the purpose of: fostering the study of the science and the practice of allergy; fostering high standards of the practice of allergy; teaching members by presenting educational programs; and promoting the health and welfare of allergy patients through education of its members.
Contact: (603) 436-7897

NORD National Organization of Rare Diseases  A large database of organizations and resources for individuals and families regarding rare diseases.

Contact: Krista Gilbert, NH Chapter

Cystic Fibrosis Foundation, Northern New England Foundation
The mission of the Cystic Fibrosis Foundation, a nonprofit donor-supported organization, 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. The Foundation is the leading organization in the United States devoted to cystic fibrosis. It funds and accredits more than 115 care centers, 95 adult care programs and 50 affiliate programs, and more than 75 chapters and branch offices nationwide.
ContactLisa O’Connor Executive Director, (800) 757-0203

Muscular Dystrophy Association, New Hampshire Chapter
The Muscular Dystrophy Association is the nonprofit health agency dedicated to curing muscular dystrophy, ALS, and other related diseases by funding worldwide research. The Association also provides comprehensive health care and support services, advocacy and education. MDA was created in 1950 by a group of adults with muscular dystrophy, parents of children with muscular dystrophy and a physician-scientist studying the disorder. Since its earliest days, it has been energized by its number-one volunteer and national chairman, entertainer Jerry Lewis.
Contactmanchestera@mdausa.org, (603) 471-2722

National Multiple Sclerosis Society, Northeast Chapter
The Greater New England Chapter of the National Multiple Sclerosis Society serves 19,000 individuals and families affected by multiple sclerosis in Maine, Massachusetts, New Hampshire, and Vermont.
ContactCommunicationsGNE@nmss.org, (603) 344-4867

National Kidney Foundation Serving New England
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.
Contactnkfne@kidney.org, (508) 907-6030

Northeast Deaf & Hard of Hearing Services
Northeast Deaf & Hard of Hearing Services is New Hampshire’s first effort to provide centralized services for New Hampshire residents who are deaf or hard of hearing, late deafened, and deaf/blind.
Contactinfo@ndhhs.org, (603) 224-1850

New Hampshire School Nurses Association
The New Hampshire School Nurses Association promotes quality school health services by registered professional school nurses to ensure that each child can reach his or her full educational potential.
ContactPam Murphy, president, (603) 224-1850

American Cancer Society
The American Cancer Society is a nationwide, community-based voluntary health organization dedicated to eliminating cancer as a major health problem. It has 12 chartered divisions, more than 900 local offices nationwide, and a presence in more than 5,100 communities.
Contact: (603) 472-8899

American Diabetes Association
The American Diabetes Association’s mission is to prevent and cure diabetes, and to improve the lives of all people affected by diabetes.
Contact: (603) 627-9579

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.
Contact: (603) 518-1551

Children’s Neuroblastoma Cancer Foundation
The Children’s Neuroblastoma Cancer Foundation (CNCF) is the premier source for neuroblastoma information and resources.
Contactinfo@cncfhope.org, (866) 671-2623