Resource Hub
The Ann Children's Fund meets unique needs that are not covered by insurance or through other means. Through our Resource Hub, we help parents find the help they need. If they cannot meet their needs through these outside groups or insurance, we encourage them to apply for emergency assistance through the Ann Fund.
Below is a non-exhaustive list of resources available that have been helpful for our families with children with special medical needs. We are continually adding to this section. Please reach out with suggestions for organizations that we should add to this list.
ADRENAL DISEASES
National Adrenal Diseases Foundation (NADF)
General information, links to resources, support groups, articles and research, tributes, and memories.
Specifically for Congenital Adrenal Hyperplasia, they have education, referrals, research, and financial assistance for medical travel and CARE events.
Specifically for Congenital Adrenal Hyperplasia, they have information, very scientific details, resources for both individuals and education, information on clinical trials.
ATTACHMENT
Karen Purvis Institute of Child Development
Widely regarded as the foremost expert on attachment, trauma, abuse, and neglect, with a wide range of materials, resources, practitioners, and training.
Therapist who provides counseling worldwide, as well as resources, training, and workshops.
Materials, events, online resources, blog, and an array of books and videos.
Education and materials for parents, educators, mental health professionals, a store of materials, and events.
Materials on parenting children with pre-birth and early life trauma, book study, coaching, podcasts, and training programs.
AUTISM
National Autism Association (NAA)
Providing real help and hope so all affected can reach their full potential.
Focuses on awareness, education, research, screenings, transitions, and education.
Autism Society of America (ASA)
Provides advocacy, education, information, referral, and support.
Informational video with English captions and subtitles in Spanish.
Autism Research Institute (ARI)
Non-Profit organization offering support for individuals diagnosed with autism, parents, care givers, researchers, and therapists.
Online resource founded by parents of children with autism to offer information and support for parents of children diagnosed with autism.
BLEEDING DISORDERS
Blog in English and Spanish by parents that have children with bleeding disorders.
Explains knee joint function and how bleed impact joints.
Hemophilia Federation of America
National organization providing a wide array of resources for individuals and families with bleeding disorders.
National Hemophilia Foundation Chapter Directory
State-specific chapters provide everything from information and nursing and pharmacy services to financial aid and insurance information and camps and programs.
National Hemophilia Foundation
Resources, camps, scholarships, local chapters, and publications.
Helps with insurance payments, FMLA, etc., for a wide range of special needs, not just bleeding disorders.
Cooley’s Anemia (Thalassemia specific)
Resources, clinical trials, treatment information, internships, camps, treatment centers, blood drives, conferences and webinars, support for parents who have adopted, scholarships, and news.
Thalassemia Facebook Groups
CAMPS, RESPITES, AND RETREATS
Respite weekend retreats in Florida, Ohio, Oklahoma, California, and South Carolina for Foster and Adoptive moms to gather for rest, build community, and relax!
Camps that build courage and confidence in limb-different children by providing coaching in 22 mainstream sports.
Camp for kids with Learning Disabilities, ADD/ADHD, High Functioning Autism, and Incontinence/Enuresis.
Overnight care for children with intellectual disabilities.
Week-long retreat for children who are terminally or seriously ill and their families.
Information about how to go about finding respite, including links to finding local care.
A general explanation of respite, as well as general places to search for respite assistance.
Information about respite care, including links to finding autism respite care providers.
Smaller site, includes specific camps for military and adults and seniors, in addition to children.
Provide scholarships for respite care.
State-specific listings of camps, respites, and care providers.
Child Welfare Information Gateway
Provides broad list of links to respite care programs.
CANCER
Introductory site for parents in first stages of diagnosis and treatment planning.
American Childhood Cancer Organization (ACCO)
Resources, information, free books and materials, financial assistance and links to organizations that provide assistance, hero bead program to help patients mark and process their journey.
Organization of cancer organizations which hold regular forums about improving all aspects of cancer research, diagnosis, treatment, etc.
Resources, research, news, general information, stories.
Basic introduction on pediatric cancer.
National Pediatric Cancer Foundation
Research-driven group with extensive information about current research in hospitals nationwide.
Dedicated to providing the best treatments, care and research that leads to cures for children with cancer.
Alex's Lemonade Stand Foundation
Funds research and provides emotional, financial, and logistical support for families facing childhood cancer.
Research, outreach, financial support, counseling, bereavement, and webinars.
Arms Wide Open Childhood Cancer Foundation (AWOCFF)
Research, resources, links to information and camps and bereavement camps and support, and links to wishes and gifts and financial support.
Children's Cancer Research Fund
Archive of stories
Our team helps patients and their loved ones understand their treatment options and pursue financial aid.
CLEFT LIP / PALATE
Cleft Lip & Palate Association (CLAPA)
Information, resources, videos, support for children, teenagers, and adults.
Provides resources, counseling, nutritional services, orthodontics, financial support, and other essential forms of care to ensure that children with clefts have everything they need to not just live but thrive.
Speech and Language Therapy for Cleft
Explains how cleft can affect speech and what treatment is available.
Global organization supported by more than 6,000 volunteers from over 60 countries providing surgery, dental care for thousand of children each year.
Florida Cleft Palate Craniofacial Association (FCPA)
Dedicated to promoting advocacy, collaboration, education, and family resources.
DOWN SYNDROME
National Down Syndrome Society (NDSS)
NDSS focuses on resources & support, advocacy, and community engagement.
Global Down Syndrome Foundation
Non-Profit organization dedicated to improving lives of people with Down syndrome through research, medical care, education, and advocacy.
National Down Syndrome Congress
Provides information, advocacy & support for all aspects of the lives of individuals with Down Syndrome.
Down Syndrome Foundation of Florida
Non-Profit organization made up of volunteers of loved ones with Down syndrome promoting inclusion, understanding, and acceptance by expanding opportunities for individuals, families and communities touched by Down syndrome.
Gigi’s Playhouse Down Syndrome Achievement Center In Ft Myers, FL
Provides free programming and support for individuals with Down Syndrome and their families.
International Mosaic Down Syndrome Association (IMDSA)
Provides support, information, and a variety of helpful services to meet the needs of any individual whose life has been affected by Mosaic Down syndrome.
Online forum dedicated to supporting the caregivers of children with Down Syndrome.
Health Care Information for Families of Children with Down Syndrome
AAP (American Academy of Pediatrics) guide on medical issues by age for a child with Down syndrome.
DWARFISM
Employment, education, disability rights adoption, medical issues, clothing, adaptive products, parenting, newsletter, events, social interaction, peer and parent support, scholarships, medical referrals, and programs.
Dwarf Athletic Association of America (DAAA)
The Dwarf Athletic Association of America is a nonprofit organization created in 1985 to develop, promote, and provide quality amateur level athletic competition opportunities for dwarf athletes in the United States.
Support group information around the nation.
Little Person Answers Most Googled Questions About Dwarfism
Informative video from a little person.
Little Person Inspirational New York Post Article
19 yr. old Isabella Lamanna educates people on what it’s like to live with dwarfism.
GENERAL SPECIAL NEEDS
God's Abled exists to provide a safe, creative place to help individuals with special needs reach their God-Given potential.
What is a Special Needs Child?
Information about understanding the meaning and what qualifies as a special need, financial and SSI income information.
When should your child see a chiropractor.
HEARING IMPAIRED
Hearing Loss in Children: Everything You Need to Know
Learn more about the causes, symptoms, and treatments available to children.
Learn about hearing aids for children and finding an Audiologist.
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.
Deafness and Hearing Loss - Raising Children Network
Information, plus videos for early signs, diagnosis, and intervention, financial support for babies and children.
Communication Center for the Deaf and Hard of Hearing
Non-Profit Organization serving Central Florida to provide resources, which empower and enrich the lives of individuals who are Deaf or Hard of Hearing.
National Association of the Deaf
NAD is a non-profit organization impacting future generations in the area of early intervention, education, employment, health care, technology, telecommunications, youth leadership, and more – improving the lives of millions of deaf and hard of hearing Americans.
Hearing Loss Association of America (HLAA)
HLAA provides information, education, support and advocacy.
Listening Devices: Hearing Aids, Cochlear Implants and Assistive Devices
Practical advice when choosing an hearing aid and donating hearing aids.
Hearing health, myths & facts, hearing test, about hearing professionals, hearings aids 101, advocates, and stories.
INFECTIOUS DISEASES
Informative website listing all infectious diseases, symptoms, treatments, who is at risk and how to prevent.
National Foundation of Infectious Diseases (NFID)
Educates the public and healthcare professionals.
Infectious Disease Society of America
Information regarding patient care, education, research, prevention relating to infectious disease.
Everything you need to know
Connect to other parents with children with HIV.
LIMB DIFFERENCES
Camps that build courage and confidence in limb-different children by providing coaching in 22 mainstream sports.
Miracle Limbs Courage in Motion
Naples, FL non-profit organization is committed to providing amputees and their immediate families the resources necessary to overcome the physical, emotional, and financial hurdles that accompany the experience of losing a limb(s).
A non-profit humanitarian organization in the world that provides full prosthetic leg system and comprehensive rehabilitation program for amputees.
Empower people affected by limb loss to achieve their full potential through education, support, and advocacy, and to promote limb loss prevention.
Improving lives of children with limb loss, both domestic and international.
MENTAL HEALTH
Gateway to Mental Health Services
Provides a basic general introduction to a wide array of mental health issues, with an overview of symptoms and treatments, links to websites and blogs and books and movies that can be useful and provides referrals for treatment.
Has a large list of Concerns and Disorders. Within each, you find a list of articles that help with that issue in a specific area. For example, if your child has anxiety, how do you help them face fears about doctors? It also provides generalized guides for parents dealing with a specific challenge, for example, a general guide to your child’s anxiety. There is a symptom checker as well, which can help you identify which issues your child might be facing.
National Alliance on Mental Illness (NAMI)
Provides information on treatment and support and connects people with discussion groups to talk with others facing the same issues.
Type the issue you are researching into the search bar, and it will provide links a variety of resources, websites, books, latest news, community boards, and symptom information.
The American Academy of Child & Adolescent Psychiatry (AACAP) – Resource Center
Connect to a wide array of articles, clinical resources, research and training, and links to general websites for the following issues: Anxiety, ADHD, Autism, Bipolar, Bullying, Trauma and Child Abuse, Conduct Disorder, Depression, Disaster, Military Families, Moving into Adulthood, OCD, ODD, Substance Abuse, and Suicide.
A variety of resources for each issue, both in specific areas (e.g., anxiety) and overarching issues (e.g., bullying).
Connects you to a variety of resources for a wide range of mental health issues.
MUSCULAR DYSTROPHY
Muscular Dystrophy Association (MDA)
Wide range of neuromuscular diseases, care centers, resources, camp, conference, clinical trials, events, clinical trials, and blog.
Parent Project Muscular Dystrophy
Duchenne and Becker, information, free genetic testing, community connections, centers, insurance information, life and classroom resources, research, clinical trials, and conferences.
General overview about Muscular Dystrophy.
Links to diagnoses and tests, treatments and therapy information, living with MD, videos and tutorials, clinical trials, articles, and genetics.
Centers for Diseases Control (CDC) and Prevention
General introductory site, includes links to articles, resources, research, etc.
National Institute of Neurological Disorders and Stroke (NINDS)
General information on MD, with specifics on publications, links to many individual-disorder-specific sites, and clinical trials.
For congenital muscular dystrophy, information, clinics, events, conference, care, research, podcast, and news.
Focuses on life skills, daily living, relationships, activities, and travel.
Sarepta Therapeutics site specifically for Duchenne Muscular Dystrophy, with information about genetics, resources, clinical trials, DMD language and words, and family support.
PHENYLKETONURIA (PKU)
Information, resources, PKU clinics, recipes, events, and connections to other families with PKU.
Recipes and food suggestions for a PKU diet.
Research, resources, clinics, insurance, cooking, financial support for pregnant women who have PKU, disability information, news, conferences, and camps.
PKU Life Podcast with Kevin Alexander
Talks about living with PKU and research pertinent to PKU
SPINA BIFIDA AND HYDROCEPHALUS
Has a great resource section, with a huge number of links in different categories.
Advocacy, adult retreat, financial support, resources, scholarships, and education.
Centers for Disease Control and Prevention
Data, statistics, research, and treatments.
General introductory information, along with information about related and similar conditions.
National Institute of Neurological Disorders and Stroke
Basic overview with information on clinical trials and links to other resources.
National Library of Medicine, Genetics Home Reference
General information with a focus on genetics.
Spina Bifida Hydrocephalus Queensland
International organization with a wide array of links to Spina Bifida resources.
A camp for children with Spina Bifida
International Federation for Spina Bifida and Hydrocephalus
Member organization where members are organizations led by people with Spina Bifida and parents of children with Spina Bifida, with a focus on advocacy and prevention.
Society for Research into Hydrocephalus and Spina Bifida (SRHSB)
Research organization, host conferences and maintains links to other organizations and conferences.
UROGENITAL CONDITIONS
Hospital with excellent information regarding and Anorectal Malformations and a very popular clinic team.
Hospital with excellent information regarding and Anorectal Malformations and a very popular clinic team.
Facebook Group for Families Considering Adopting a Child with an ARM Condition
VISUALLY IMPAIRED
American Council of the Blind (ACB)
Has national, state, and location organizations run by visually impaired people that include publications, scholarships, radio, hotline, outreach, meetings, and employment assistance.
American Foundation for the Blind (AFB)
Works with organizations with disability-inclusion challenges.
Designed to connect families with visually impaired children.
Research organization focusing on prevention, treatments and cures for people affected by retinitis pigmentosa (RP), macular degeneration, Usher syndrome, and the entire spectrum of retinal degenerative diseases.
Healthcare services, education for healthcare providers, programs, vocational services, and scholarships.
National Federation of the Blind (NFB)
Advocacy, education, technology, and training programs for people who are blind and visually impaired.
Creates elite working dogs and provides services for people with vision loss, veterans with disabilities, and children with significant challenges such as vision loss or the loss of a parent in the military.