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Related Links ABLEDATA
is a federally funded project whose primary mission is to provide
information on assistive technology and rehabilitation equipment
available from domestic and international sources to consumers,
organizations, professionals, and caregivers within the United States.
Access-Able
Travel Source is dedicated to aiding travelers with disabilities
and the mature traveler. We accomplish this by having practical
information needed to go cross-town or around the world. The database
has not only accessible accommodations but also everything to make
a trip fun and exciting. All
Family Resources,using their e-collaboration system™,provides
a wide-range of quality resources that are easily available to both
individuals and organizations, for the purpose of enriching the
lives of all families. American
Academy of Allergy, Asthma and Immunology (AAAAI) is the largest
professional medical specialty organization representing allergists,
clinical immunologists, allied health professionals, and other physicians
with a special interest in allergy.
The mission of the American
Academy of Pediatrics is to attain optimal physical, mental
and social health and well being for all infants, children, adolescents
and young adults. To this purpose, the AAP and its members dedicate
their efforts and resources.
The American Diabetes
Association is the nation's leading nonprofit health organization
providing diabetes research, information and advocacy. Angelman
Syndrome Foundation, Inc. ASF's Mission is to advance the awareness
and treatment of Angelman Syndrome through education, information
exchange and research. Any
Baby Can Child and Family Resource Center Serving families in
Travis and Williamson Counties, Texas at risk of having a child
with developmental delays or who are caring for a child with disabilities
or critical health care needs. Arkansas
Children’s Hospital,
a private, non-profit institution, is the only health care facility
in Arkansas dedicated exclusively to children and is one of the
ten largest in the nation. AsthmaMoms
AsthmaMoms is a network of families sharing answers for managing
their children's asthma. It's also a community of concerned parents,
reassuring one another that their deepest fears about their children's
asthma can be overcome. It provides what the medical organizations
can't, a supportive community of parents. Association
for the Bladder Exstrophy Community
is an international support group network comprising individuals
with bladder exstrophy, local parent-exstrophy support groups, and
health care providers who work with patients and families living
with bladder exstrophy. We collect resources, talent, and information
to assist patients and families living with bladder exstrophy to
help them master the medical and psychosocial issues relating to
exstrophy. The
Association of Schools and Agencies for the Handicapped (ASAH)
is a professional organization of private schools and agencies in
New Jersey which provides highly specialized services to more than
10,000 children and adult with special needs. Some of our goals
are to insure high standards in all New Jersey private schools and
agencies serving individuals with special needs and referral for
anyone seeking appropriate educational placement of individuals
with special needs. Blood
& Marrow Transplant Information Network (BMT InfoNet) Patient-friendly
handbooks and a quarterly newsletter about transplantation. Links
patients with survivors who can provide emotional support. Maintains
an online Directory of Transplant Centers in the US and Canada,
an online Directory of Drugs used during transplant, and an online
Resource Directory. Offers attorney referrals for patients who have
insurance disputes. Comprehensive website. Brave
Kids Our Mission is to broaden the support and resources available
for children with chronic or life-threatening illnesses. By utilizing
the power of the Internet, Brave Kids delivers a multi-lingual resource
center to families and medical professionals whose goal is to empower
children with special needs to continue their brave struggle against
illness.
Since 1944, Cancer
Care, Inc. has been dedicated to providing emotional support,
information, and practical help to people with cancer and their
loved ones. The
Candlelighters Childhood Cancer Foundation CCCF has a network
of parent support groups in all US states and on every continent.
The services that local groups commonly provide include meetings,
speakers, parent-to-parent visitation, summer camps, transportation,
emergency funding and publications. The
mission of Children
with Diabetes.com is to promote understanding of the care and
treatment of diabetes, especially in children; to increase awareness
of the need for unrestricted diabetes care for children at school
and daycare; to support families living with diabetes; and to promote
understanding of research into a cure. Children’s
Cancer Research Fund (CCRF) was founded in January 1993 by a
small group of doctors, nurses and parents. The fund's primary goal
is to establish and foster research in childhood cancer as well
as enrich the quality of life for children with cancer by improving
clinical and support services. CCRF is based at New York Medical
College/Westchester Medical Center in Valhalla, New York. Children’s
Dream Foundation The CDF's only agenda is improving the health
care services provided to the community's most precious resource….
its children. Children's
Hospice International (CHI) was founded as a non-profit organization
to provide a network of support and care for children with life-threatening
conditions and their families. The hospice approach for children
is a team effort that provides medical, psychological, social and
spiritual expertise and information in the United States and abroad.
Children’s
Liver Alliance Empowering the hearts and minds of children with
liver disease, their families and the Medical professions who care
for them. Children's
Liver Association for Support Services
C.L.A.S.S. is an all-volunteer, nonprofit organization dedicated
to serving the emotional, educational, and financial needs of families
coping with childhood liver disease and transplantation. Our goal
is to be both a service to families and a valuable resource for
the medical community. Children’s
Medical Services
(CMS) is the Arkansas Title V program for children with special
health care needs. CMS serves families with disabled and chronically
ill children from birth to age 18 (and up to age 21 if funds are
available). The dedicated, caring staff of CMS is vitally interested
in providing to these families services that they need to care for
their children and keep the families intact. Chromosome
Deletion Outreach, Inc. is a non-profit, all volunteer, parent
support organization founded in 1992. Our membership consists of
individuals, families and professionals seeking information regarding
a variety of chromosome disorders. Although our focus in the past
was deletions, we now encompass most types of chromosome disorders:
including partial duplications (trisomies), inversions, translocations,
rings and sex chromosome disorders. CDO's mission is to provide
support to parents of children born with rare chromosome disorders,
gather and disseminate information and promote research and a positive
community understanding of these disorders.
The Connecticut
Parent Advocacy Center, Inc. (CPAC) is a statewide nonprofit
organization that offers information and support to families of
children with any disability or chronic illness, age birth through
21. Congress.org
is a joint venture of two Washington, D.C. area firms with expertise
in communicating with Congress. Craniosynostosis
and Parents Support, Inc. (C.A.P.S.) is a national nonprofit
organization who is dedicated to helping families find support and
information to help deal with craniosynostosis and positional plagiocephaly.
Our goal is to raise public and professional awareness through educating
doctors, healthcare organizations, parents, and loved ones. Disability.gov
The Presidential Task Force on Employment of Adults with Disabilities
created http://www.disAbility.gov to provide one-stop online access
to resources, services, and information available throughout the
Federal government. drkoop.com
is an internet-based consumer healthcare network. Our network provides
users with trusted healthcare content, services and tools to empower
them to better manage their health. The
Eyes of Hope Foundation
is a nonprofit organization devoted to finding a cure for Spinal
Muscular Atrophy (SMA I), the number one inherited cause of infant
death. The initial goal for Eyes of Hope is to build national public
awareness of SMA and to help accelerate the funds raised for SMA
research. By working closely with all of the existing SMA fundraising
groups, The Eyes of Hope plans to maximize the results by initiating
collective marketing and public awareness campaigns.
The Families and Advocate
Partnership for Education is a new project that aims to inform
and educate families and advocates about the Individuals with Disabilities
Education Act of 1997 (IDEA 97). The Partnership helps to ensure
that the changes made in IDEA are understood by families and advocates
and are put into practice at local and state levels. Families
USA is a national nonprofit, non-partisan organization dedicated
to the achievement of high-quality, affordable health and long-term
care for all Americans. Working at the national, state and community
levels, we have earned a national reputation as an effective voice
for health care consumers for over 15 years. Family
Voices Created by families from throughout the United States
who have children with special health needs. A diverse group, representing
a wide variety of children, health conditions, families, and communities.
The mission of the Fathers
Network is to celebrate and support fathers and families raising
children with special health care needs and developmental disabilities.
The Federation for Children
with Special Needs is a center for parents and parent organizations
to work together on behalf of children with special needs and their
families. We can help! Organized in 1975 as a coalition of parent
groups representing children with a variety of disabilities, the
Federation operates a Parent Center, which offers a variety of services
to parents, parent groups, and others who are concerned with children
with special needs. The
Genetic Alliance (formerly The Alliance of Genetic Support Groups,
Inc.), is an international coalition of individuals, professionals
and genetic support organizations that is working together to enhance
the lives of everyone impacted by genetic conditions. HealthAnswers,
Inc. is the producer of a comprehensive, educational and award-winning
interactive healthcare Web site for consumers and professionals
alike. HealthBridge
Children's Rehabilitation Hospital
provides Acute, Subacute and Outpatient Rehabilitation services
for children and adolescents from birth to twenty-one years of age.
Our interdisciplinary team of highly respected clinicians recognizes
that each child requires an individualized treatment plan based
on that child's specific medical, developmental, cultural and educational
needs. The
HealthLinks.net
website is a free World-Wide Directory - Portal Service for healthcare
professionals and consumers. Our main focus is to assist in the
task of locating medical and healthcare information, products, resources,
services and practitioners on the World-Wide-Web. @InsideHealthCare.com
An extensive listing and directory of Internet healthcare resources
including online organizations, clinical information, policy positions
and current research. Institute
for Child Health Policy , a state-wide Institution of Florida's
State University System, was established in October 1986. The Institute
has headquarters at the University of Florida, in Gainesville
and affiliates at the University
of South Florida, Florida State University and the University of Miami. The Institute
for Child Health Policy has focused its attention on children in
managed care with special a emphasis on children with special health
care needs. The
Jason Program is a non-profit organization that creates a community
of care and support for children and adolescents with life-threatening
and terminal illness. We are dedicated to creating community
based teams trained in the special needs of these children and their
families throughout the state of Maine. Joslin
Diabetes Center and the Joslin Clinic are international leaders
in diabetes treatment, research, and education. Established in 1898,
and affiliated with Harvard Medical School, Joslin leads the field
in both basic and clinical research, and is devoted to educating
both patients and professionals. The
mission of the Juvenile
Diabetes Foundation International (JDF) is to find a cure for
diabetes and its complications through the support of research.
We work to accomplish this by finding and funding the best and most
relevant research to help achieve a cure for this devastating disease.
Kaleida
Health When it comes to comprehensive health care in
Western New York, Kaleida Health is by far the dominant provider
with five hospitals, 60-plus service locations, research and residency
programs, and some of the world's most advanced technology providing
clinical research, state-of-the-art procedures, and a full spectrum
of prenatal to geriatric services. Kids’
Home at National Cancer Institute
CancerNet provides recent and accurate cancer information from the
National Cancer Institute,
the Federal Government's principal agency for cancer research. You
will find a wide range of cancer information including treatment
options, clinical trials, ways to reduce cancer risk, cope with
cancer, as well as resources on support groups, financial assistance,
educational materials, and much more. Many young persons are treated
for cancer, HIV, and other illnesses. This section is for them.
We hope you will visit here often and contribute your own artwork,
stories, poems, or ideas for this area. KidsHealth.org
is one of the largest sites on the Web providing doctor-approved
health information about children from before birth through adolescence.
Kids
With Heart Providing support, education, and information for
families of children and adults with congenital heart defects and
acquired heart disease. KFS
Connection (Klippel-Feil Syndrome)
The KFS Support Connection was founded in June of 1996, to provide
three basic purposes. First, the Members' Directory and Chat Connection
foster the sharing of information and support between families or
individuals with KFS. Second, these pages will be continually updated
with information and links that KFS Connection members have identified
as being helpful in overcoming the various KFS-related problems
they face each day. Third, research into KFS is facilitated through
the gathering of individual medical information and symptoms, so
that the existing knowledge of KFS can be expanded and clarified. Maine
Parent Federation
provides information about: specific disabilities, parenting
issues, education, services, support groups and other resources
available to assist families and professionals within the home,
school and community. Make-A-Wish
Foundation of Metro New York is
the largest Make-A-Wish chapter in the country. Since its inception
in 1983, the Metro New York chapter has fulfilled more than 3,500
wishes for children with life-threatening illnesses.
The mission of the March
of Dimes is to improve the health of babies by preventing birth
defects and infant mortality. The March of Dimes carries out this
mission through programs of research, community services, education
and advocacy. Massachusetts
Citizens for Children
(MCC) was founded in 1959 by Dr. Martha May Eliot, an
internationally recognized pediatrician and chief of the US Children's
Bureau (1951 - 1956). We are a non-profit statewide child advocacy
organization, whose mission is to improve the lives of the state's
most vulnerable children through advocacy by concerned citizens. MUMS:
National Parent to Parent Network is a national organization
for parents or care providers of a child with any disability, rare
or not so rare disorder, chromosomal abnormality or health condition.
MUMS' main purpose is to provide support to parents in the form
of a networking system that matches them with other parents whose
children have the same or similar condition.
The National Cancer
Institute (NCI) is a component of the National Institutes of
Health (NIH), one of eight agencies that compose the Public Health
Service (PHS) in the Department of Health and Human Services (DHHS).
The NCI, established under the National Cancer Act of 1937, is the
Federal Government's principal agency for cancer research and training.
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.
The
National
Children’s Leukemia Foundation is a national, non-profit organization
whose sole purpose is to provide a wide variety of services, support,
and referrals to leukemia patients and their families. Our primary
goal is to ensure access to state-of-the-art treatment for every
leukemia patient - regardless of ability to pay. National
Early Childhood Technical Assistance System (NECTAS)
is a national technical assistance consortium working to support
states, jurisdictions, and others to improve services and results
for young children with disabilities and their families. Our primary
business is technical assistance. This is a systematic process for
transferring knowledge about early childhood research, practice,
and policy to assist people and organizations in accomplishing their
goals for young children with disabilities and their families. The
National Family
Caregivers Association is the only national, charitable organization
dedicated to making life better for all of America's family caregivers.
There are more than 25 million people who find themselves in a caregiving
role. And the numbers are growing daily. Family caregivers focus
on their loved one's needs. NFCA focuses on family caregivers. The
National Health
Councill is a private, nonprofit umbrella organization comprised
of more than 100 national health-related organizations, including
over 40 of the nation's leading patient-based groups, also known
as voluntary health agencies. These groups represent approximately
100 million people with chronic diseases and/or disabilities. The
National Institute
of Diabetes and Digestive and Kidney Diseases (NIDDK) conducts
and supports basic and clinical research. National
Marfan Foundation This organization helps people who have Marfan
syndrome and related connective tissue disorders. It provides information
and materials about the disorder and about how to seek appropriate
medical care. National
Multiple Sclerosis Society The National Multiple Sclerosis Society's
mission is to end the devastating effects of MS. Through its fifty-state
network of chapters, the Society funds research, furthers education,
advocates and provides a variety of empowering programs for the
third of a million Americans who have MS and their families. The
National Oral
Health Information Clearinghouse (NOHIC), a service of the National
Institute of Dental and Craniofacial Research, is ready to help
meet oral health information needs for special care patients. Many
Americans have medical or disabling conditions that compromise oral
health. NOHIC is a resource for health professionals and these special
care patients that gathers and disseminates information from many
sources, including voluntary health organizations, research institutions,
government agencies, and industry. The
National Organization for Albinism and Hypopigmentation
NOAH is a non-profit organization for people who have albinism,
their families and the professionals who support them. NOAH is run
entirely by volunteers. The
National Organization
for Rare Disorders (NORD) is a unique federation of voluntary
health organizations dedicated to helping people with rare "orphan"
diseases and assisting the organizations that serve them. NORD is
committed to the identification, treatment, and cure of rare disorders
through programs of education, advocacy, research, and service.
National
Pediatric AIDS Network NPAN is a resource for information on
children and adolescents with HIV/AIDS. NPAN is a non-profit organization
that works collaboratively with a number of other HIV/AIDS information
providers. The
National Respite
Locator Service helps parents, caregivers, and professionals
find respite services in their state and local area. The service
is also useful when a family travels or must move to another state.
The
National Sports Center for the Disabled (NSCD) is an innovative
non-profit organization that provides recreation for children and
adults with disabilities. What began in 1970 as a one-time ski lesson
for 23 amputee children has evolved into the largest and most successful
program of its kind in the world. Participants learn there is "no
mountain too high" through NSCD opportunities that build self-confidence
through recreational and competitive challenges. The
National Sudden
Infant Death Syndrome Resource Center (NSRC) provides information
services and technical assistance on sudden infant death syndrome
(SIDS)and related topics. Our goal is to promote understanding of
SIDS and provide comfort to those affected by SIDS through information
sharing. National
Tay-Sachs and Allied Diseases Association, Inc. (NTSAD) was
founded in 1956 by a small group of concerned parents with children
affected by Tay-Sachs disease or a related genetic disorder. Dedicated
to the defeat of Tay-Sachs and several allied diseases, NTSAD was
an early pioneer in the development of community education about
Tay-Sachs disease, carrier screening programs and laboratory quality
control programs -- thereby ensuring that those being tested received
accurate and reliable information and test results. Nevada
Parents Encouraging Parents (PEP) Professionals dedicated to
family empowerment and parents work together to enhance and expand
support services for children with disabilities and their families. New
Hampshire Family Voices NH Family Voices is a family-to-family
health information and resource project supported by New Hampshire
Department of Health and Human Services-Special Medical Services,
and the New Hampshire Coalition for Citizens with Disabilities-Parent
Information Center. New Hampshire Family Voices are parents of children
with special health, developmental, mental health and educational
needs. These parents have years of experience accessing and receiving
services as well as working to assist others in understanding and
identifying services that can be of assistance to them. New
Hanover Health Network The hospitals and services that are part
of New Hanover Health Network have long, established roots in Southeastern
North Carolina. Working together under the umbrella of NHHN, they
are better equipped than ever to handle your family's health care
needs. Offering the most comprehensive and sophisticated array of
services in the region. As a public, not-for-profit system, we
offer care to everyone who needs it, regardless of their ability
to pay. New
York State's Parent Training & Information Center (PTI)
Parents supporting parents and professionals to enable individuals
with disabilities to seek their own potential. Congressional
intent is for parent involvement!
A PTI is an organization staffed by experienced parents who
have been trained to bring up-to-date information to: families with
children with disabilities, professionals who work with such families,
and members of the community who are interested in improving the
quality of life for the people with disabilities. North
American Society for Pediatric Gastroenterology and Nutrition,
founded in 1972, is the only society in North America and the largest
in the world, dedicated to serving the pediatric gastroenterology
and nutrition community. NASPGN was established to advance the understanding
of the normal development and physiology of diseases of the gastrointestinal
tract and liver in infants, children, and adolescents, and to foster
the dissemination of this knowledge through scientific meetings,
public education, and collaboration with other organizations concerned
with pediatric gastroenterology and nutrition. Parent
Education Network (PEN) is Pennsylvania's statewide Parent Training
and Information Center. Much of the information included in this
site is designed to support Pennsylvania parents of children with
special needs, but information and links are included on Federal
Special Education, National Disability Issues and Resources, Special
Education Legal Links, Transportation, and Travel that will also
pertain to parents and individuals with disabilities in other states. Parent
Information Center of New Hampshire is an organization serving
children and youths with special needs and their families.
We provide information, technical assistance, individual assistance,
and support and referrals to allow families to become informed,
skilled and effective advocates.
The mission of Parents
Educating Parents and Professionals, Inc. (PEPP, Inc.) is to
provide a presence and State and National voice for all families
of children and youth with disabilities. Parents
Helping Parents is a parent-directed family resource center
serving children with special needs, their families, and the professionals
who serve them. Parents,
Let's Unite for Kids PLUK is a private, nonprofit organization
formed in 1984 by parents of children with disabilities and chronic
illnesses in the state of Montana for the purpose of information,
support, training and assistance to aid their children at home,
school and as adults. Patient
Advocate Foundation
is a national non-profit organization that serves as an active liaison
between the patient and their insurer, employer and/or creditors
to resolve insurance, job discrimination and/or debt crisis matters
relative to their diagnosis through case managers, doctors and attorneys.
Patient Advocate Foundation seeks to safeguard patients through
effective mediation assuring access to care, maintenance of employment
and preservation of their financial stability. The
Rhode Island Parent Information Network, Inc. is a group parents
and professionals with the goal of improving education for children
with disabilities. They believed that if parents were informed
and educated, they could help their children reach their full potential.
The Sibling
Support Project is a national program dedicated to the interests
of brothers and sisters of people with special health and developmental
needs. The Project's primary goal is to increase the availability
of peer support and education programs for brothers and sisters
of people with special health and developmental needs. Special
Child An online publication dedicated to parents of children
with special needs. Special
Needs Advocate for Parents provides information, education,
advocacy, and referrals to families with special needs children
of all ages and disabilities. The
Special Needs Agency
consults and educates families in Pennsylvania and Maryland
in appropriate long-term planning and government entitlements for
a person with special needs. St.
Mary's Healthcare System for Children is dedicated to achieving
optimal outcomes for the special infants, children, and adolescents
who come to us for care. Our pediatric specialists in medicine,
nursing, rehabilitation, psychology, social work, and education
work closely with parents and families to develop each child's full
potential. Statewide
Parent Advocacy Network, Inc.
SPAN is a non-profit educational and advocacy center
for parents of children from birth to 21 years of age. SPAN assists
families of infants, toddlers, children and youth with and without
disabilities. Our overall purpose is to serve as a vehicle for the
exchange of ideas, promoting awareness of the abilities and needs
of children and youth and improving services for children and families
in the State of New Jersey. The
Turner Syndrome Society of the U.S.
To promote the successful rearing, affirmation, and support of individuals
affected by Turner Syndrome. The
Vascular
Birthmarks Foundation provides support and resources for children
and adults born with hemangiomas, port wine stains, and other vascular
birthmarks. Wilson's
Disease Association International (WDA) is an all-volunteer
organization striving to promote the well being of patients with
Wilson's Disease and their families and friends. Wilson's Disease
is a rare genetic disease. It is often very difficult to find accurate,
timely information on the disease. Our web site addresses this need
by offering information about the disease, its cause, symptoms,
and treatments. KidNeeds.com is committed to providing our visitors and subscribers with access to accurate and timely information on a broad range of topics relative to developmental disabilities. If you have any special requests or would like to see a specific topic covered in this informational section, please e-mail us at info@kidneeds.com
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