ACD Resources

Resources

  1. Brochures

    Patient and Family Brochure

    View PDF    OR     Download PDF

    Diagnostic Brochure

    View PDF    OR     Download PDF

    Outreach Brochure

    View PDF    OR     Download PDF

  2. State & Government

    U.S. Department of Labor, Office of Disability Employment Policy

    www.dol.gov

    Disability Government

    Federal government website that provides quick access to national and local resources for people with disabilities, their families, and friends.

    www.disability.gov

  3. Financial Aide

    Social Security Disability Benefits

    The Social Security Administrations provides benefits through two programs: the Social Security disability insurance program and the Supplemental Security Income (SSI) program. Learn more about these programs including eligibility, how to apply, and how to appeal a claim denial.

    www.ssa.gov

    Medicaid and Medicare

    All about medicaid and medicare from the Centers for Medicare and Medicaid services.

    www.cms.gov

    Medicaid Waiver Programs

    These programs are state based and administered by the medicaid authority. Waiver programs may provide a combination of both traditional medical services (i.e. dental services, skilled nursing services) as well as non-medical services (i.e. respite, case management, environmental modifications). This list contains information about state-specific programs.

    www.cms.gov/medicalwaiver

    Benefits.Gov

    Benefits.gov (formerly GovBenefits.gov) was launched in an effort to provide citizens with easy, online access to government benefit and assistance programs.

    www.benefits.gov

    Insure Kids Now, US Department of Health and Human Services

    Free or low-cost health insurance in each state for low income families.

    www.insurekidsnow.gov

    United Healthcare Children’s Foundation

    The Foundation provides financial assistance to families of children whose commercial insurance coverage does not fully cover the cost of treatment.

    www.uhccf.org

    Partnership for Prescription Assistance Programs

    The Partnership for Prescription Assistance helps qualifying patients without prescription drug coverage get the medicines they need for free or nearly free.

    www.pparx.org

    Needy Meds

    Needy Meds is a non-profit information resource devoted to helping people in need find medication assistance programs, disease-based assistance, free and low- clinics, government programs, and other types of assistance programs that help with costs related to health care.

    www.needymeds.org

    Medicine Program

    Free prescription medication program for those who qualify.

    www.themedicineprogram.com

    The Children’s Foundation

    Administers the Variety Kids on the Go! program which provides funding for walkers, wheelchairs, specially-designed adaptive bikes, strollers, prosthetic limbs, and other devices to families of children with disabilities.

    Disabled Children Relief Fund

    Benefits.gov (formerly GovBenefits.gov) was launched in an effort to provide citizens with easy, online access to government benefits and assistance programs.

    www.dcrf.com

    First Hand Foundation

    Helps families of children with health problems address the financial aspects of their child’s healthcare. Must qualify. First Hand helps with clinical expenses, medical equipment, and relocation during treatment.

    www.firsthandfoundation.org

    Matthew Dudgeon Memorial Fund

    Raises monies and disburses funds to families caring for chronically ill children.

    www.themattyfund.org

    Ronald McDonald House

    Raises monies and disburses funds to families caring for chronically ill children.

    www.rmhc.org

    Caring Voice Coalition

    A privately funded organization that offers comprehensive outreach programs and services aimed at financial, emotional, and educational support.

    Caringvoice.org

  4. Health Services

    Baby’s First Test

    Provides information and resources about newborn screening at the local, state and national levels.

    www.babysfirsttest.org

    Children’s R.A.R.E. Disease Network

    Online community where children with rare diseases and their families communicate, collaborate, and get resources for networking, advocating, and blogging.

    www.crdnetwork.org

    National Health Information Center (NHIC)

    Established by the U.S Department of Health & Human Services, NHIC helps put health professionals and consumers who have health questions, in touch with those organizations that are best able to provide answers.

    www.health.gov

    National Institutes of Health (NIH) Office of Rare Diseases (ORD)

    Provides information about ORD sponsored biomedical research, scientific conferences, and rare and genetic diseases.

    www.rarediseases.info.nih.gov

    MedicAlert

    Provider of medical information including ID alert services and response center.

    www.medicalert.org

  5. Legal/Advocates

    Protection and Advocacy for People with Disabilities Network

    Each state has a federally mandated protection and advocacy agency that safeguards and advances the civil and human rights of people with disabilities. Agencies provide information and referral, investigate complaints of rights violations, and work to resolve complaints through mediation, dispute resolution, and litigation.

    www.ndrn.org

    American Bar Association Commission on Mental and Physical Disability

    The Commission carries out an array of projects and activities addressing disability-related public policy, disability law, and the professional needs of lawyers and law students with disabilities.

    www.americanbar.org

    Families USA

    Healthcare advocacy network.

    www.familiesusa.org

    Lanterman Regional Center Conservatorship

    A PDF booklet (CA) of information regarding conservatorship. Please see each state’s for legal conservatorships and legal filing.

    www.lanterman.org

    Patient Advocate Foundation

    Serves as a liaison between patients and their insurers, employers, and/or creditors to resolve insurance, debt crisis, and/or job retention matters related to their diagnosis.

    www.patientadvocate.org

    Special Needs Alliance

    Organization of attorneys dedicated to the practice of disability and public benefits law. Committed to helping individuals with disabilities, their families, and professionals who represent them.

    www.specialneedsalliance.com

  6. Family/Caregiver

    National Family Caregivers Association

    Dedicated to supporting and improving the lives of family caregivers. Created to educate, support , empower, and advocate for the millions of Americans who care for their ill, aged or disabled loved ones.

    www.caregiveraction.org

    National Alliance for Caregiving

    A national non-profit agency for caregivers that offers free studies and brochures on caregiving, and hosts a searchable database of articles.

    www.caregiving.org

    Center for Parenting Information and Resources

    Collected information and resources for parents and caregivers.

    www.parentcenterhub.org

    Family Voices

    A national network of state based programs aimed at achieving family-centered care for children and young adults with disabilities and health care needs. Provides families with the tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care.

    www.familyvoices.org

    Family Village

    A global community that collects information for people with disabilities, their caregivers, and their community. Includes resources on adaptive technology, recreation, and related media and literature.

    www.familyvillage.wisc.edu/index.html

    Care.com

    Find a baby sitter or nanny in your local area who is experienced with special needs children. Prescreened. Detailed profiles provide experience, availability, and specific services information.

    www.care.com

  7. Therapy Assistance

    Book Share

    Children with qualifying disabilities can have free access to over 57,000 e-books.

    www.bookshare.org

    Child Mind Institute

    Resources for managing behavior issues and other child topics of concern.

    www.childmind.org

    National Resource Center for AD/HD

    Collected informational resource link for information on Attention Deficit/Hyperactivity Disorder.

    www.help4adhd.org

    TACA

    The Talk About Curing Autism (TACA) goal is to provide education, support, and information to parents to help their children diagnosed with autism be the best they can be, with the hope of recovery.

    www.tacanow.org

  8. Education Services

    The Exceptional Parent

    A magazine that provides information, support, ideas, encouragement, and outreach for parents and families of children with disabilities and the professionals who work with them.

    www.eparent.com

    Kids Quest

    Created by the Center for Disease Control and Prevention- a government agency. Helps kids learn about various disabilities and health.

    www.cdc.gov

    National Dissemination Center for Children with Disabilities (NICHCY)

    Federal information source for disabilities, special education laws, No Child Left Behind, educational practices, IEP resources, and state resources.

    www.parentcenterhub.org

    Wrightslaw

    Reliable information about special education law and advocacy for children with disabilities.

    www.wrightslaw.com

    National Resource Center on AD/HD

    Information regarding educational rights for children with special needs.

    www.help4adhd.org

    The IEP Process Explained – Special Education Guide

    A guide to individualized education programs for teachers and parents. Learn about the IEP process, including IEP meetings, goals, and accommodations.

    www.specialeducationguide.com

  9. Supportive Services

    Easter Seals

    Provides services to children and adults with disabilities and other special needs, and support to their families. Includes adult services, childcare, and medical help for those who qualify.

    www.easterseals.com

    Epilepsy Foundation

    Works with children and adults affected by seizures through research, education, advocacy, and service.

    www.epilepsy.com

    Association of Gastrointestinal Motility Disorders, Inc. (AGMD)

    Education, information, and support for patients suffering from digestive motility disorders.

    www.agmd-gimotility.org

    The ARC

    World’s largest community based organization for people with intellectual and developmental disabilities. Works to include all children and adults with cognitive, intellectual, and developmental disabilities in every community.

    www.thearc.org

    Caring Bridge

    Free personalized websites that support and connect loved ones during critical illness, treatment, and recovery.

    www.caringbridge.org

    Gene Tests

    Medical genetics information resources including disease reviews, genetics testing lab directory, clinics, and educational materials.

    www.genetests.org

    Genetic Alliance

    Genetic Alliance has resources in areas of bioethics, disability, genetics, government agencies, grief and loss, insurance, public policy, and publishes the Newsletter Alert.

    www.geneticalliance.org

    Autism Speaks

    Information and resources for the diagnosis of autism.

    www.autismspeaks.org

    Hugs & Hope

    Sick children can join this club and receive “happy mail” (cards & gifts) from volunteers.

    www.hugsandhope.org

    National Organization for Rare Diseases (NORD)

    Cerebral Creatine Deficiency Syndrome information. Resource guide.

    www.rarediseases.org

    Oley Foundation

    Helping people whose daily survival depends on home intravenous or tube fed nutrition.

    www.oley.org

    Ability Magazine

    A leading magazine that focuses on health, disability, and human potential, and provides new insights on individual levels of ability.

    www.abilitymagazine.com

    Exceptional Parent

    An online magazine for parents of children and young adults with disabilities. Includes news forum, links, and online bookstore.

    www.eparent.com

    United Mitochondrial Disease Foundation

    Education, information, and support for patients with primary and secondary mitochondrial dysfunction.

    www.umdf.org

    United Cerebral Palsy Foundation

    For people with CP and related or similar conditions. Advocates for the rights of persons with any disability. Online resource guide for every state.

    ucp.org

    We Move/Life in Motion

    Comprehensive resource for movement disorder information and movement disorder activities.

    www.wemove.org

  10. Recreational Services

    Travelers with Disabilities and Medical Conditions and Children with Disabilities

    Information from the TSA about the screening and security process for air travelers with disabilities, or call 1-855-787-2227.

    www.tsa.gov

    Hope, Inc.

    Provides recreational opportunities for children who are physically or mentally challenged, and their families.

    www.hopeinc.org

    National Sports Center for the Disabled

    Outdoor sports and therapeutic recreation programs that positively impact the lives of people with physical, cognitive, emotional, or behavioral challenges.

    nscd.org

    Wilderness Inquiry

    Providing outdoor adventures for people of all ages and abilities.

    www.wildernessinquiry.org

    Kid’s Camp

    Resource for camps for kids.

    www.kidscamps.com

    Center for Courageous Kids

    Providing cost free, safe, and fun camping experiences for ill and disabled children and their families.

    www.thecenterforcourageouskids.org

    Dream Street Foundation

    Providing unique camping programs, free of charge, to children with chronic diseases.

    www.dreamstreetfoundation.org

  11. Assist Technology

    Adaptive Access

    Resources for products and services for people with disabilities.

    www.adaptiveaccess.com

    Adaptive Mall

    www.adaptivemall.com

    Enabling Devices

    Toys and independent living products.

    enablingdevices.com

    USA TechGuide

    Various adaptive equipment links for daily living, recreation, leisure, and equipment swapping.

    www.usatechguide.org

    Special Needs Toys

    Includes sensory stimulation products, adaptive swing sets, games, and multi-sensory environments.

    www.specialneedstoys.com

    Mapcon

    Computer & software accessibility for the disabled.

    www.mapcon.com

    Speech and Language

    Kid friendly apps for your Apple iPad.

    www.friendshipcircle.org

    TACA

    The Talk About Curing Autism (TACA) goal is to provide education, support, and information to parents to help their children diagnosed with autism be the best they can be, with the hope of recovery.

    www.tacanow.org

  12. Diagnostics

    SimulConsult

    Get a “simultaneous consult” about a patient’s diagnosis using SimulConsult’s diagnostic decision support software.

    www.simulconsult.com

    Lineagen

    Lineagen offers FirstStepDx PLUS- a customized genetic testing service for individuals with autism spectrum disorder (ASD) and other disorders of childhood development, plus a portfolio of scientific programs in ASD, multiple sclerosis (MS), and chronic obstructive pulmonary disease (COPD).

    www.lineagen.com

    FindZebra

    FindZebra helps diagnose rare diseases. Enter clinical and phenotype information, symptoms and findings, and FindZebra returns potential diseases and genes involved.

    www.findzebra.com

  13. Via Biochemical Assessment

    Biochemical Assessment for Plasma and Urine GAA/Creatine

    • ARUP Laboratories, Biochemical Genetics Laboratory
    • Baylor Miraca Genetics Laboratories
    • Greenwood Genetic Center
    • Kennedy Krieger Institute Genetics Laboratory – Biochemical Genetics Lab
    • Mayo Medical Laboratories
    • MNG Laboratories/ Atlanta Center: Medical Neurogenetics, LLC.,
    • Seattle Children’s Hospital
    • University of Alabama Birmingham, Biochemical Genetics Laboratory
  14. Via Single Gene Sequencing

    Sequencing of GAMT (GAMT Deficiency)

    • ARUP Laboratories, Molecular Genetics Laboratory
    • Baylor Miraca Genetics Laboratories
    • Cincinnati Children’s Hospital Medical Center, Molecular Genetics Laboratory
    • Fulgent Diagnostics
    • Prevention Genetics

    Sequencing of GATM (AGAT Deficiency)

    • ARUP Laboratories, Molecular Genetics Laboratory
    • Baylor Miraca Genetics Laboratories
    • Cincinnati Children’s Hospital Medical Center, Molecular Genetics Laboratory
    • Fulgent Diagnostics
    • Prevention Genetics

    Sequencing of SLC6A8 (Creatine Transporter Deficiency)

    • ARUP Laboratories, Molecular Genetics Laboratory
    • Baylor Miraca Genetics Laboratories
    • Center for Human Genetics, Inc.
    • Cincinnati Children’s Hospital Medical Center, Molecular Genetics Laboratory
    • Fulgent Diagnostics
    • Greenwood Genetic Center Diagnostic Laboratories

    *Deletions/Duplications in these genes appear to be extremely rare. However, some of the above laboratories also offer deletion/duplication testing in addition to sequencing, which may need to be ordered separately if desired.

  15. Via Multigene Panel

    Sequencing Panels that include GAMT

    • Ambry Genetics – Comprehensive Epilepsy Testing (EpiNext)
    • Courtagen Life Sciences – epiSEEK Focus
    • Emory University – Epilepsy and Seizure Disorders Panel
    • Emory University – Neurology: Sequencing Panel
    • Fulgent Diagnostics – Epilepsy NGS Panel
    • Fulgent Diagnostics – Intellectual Disability NGS Panel
    • Fulgent Diagnostics – Lysosomal Disorders NGS Panel
    • GeneDx – Comprehensive Epilepsy Panel
    • GeneDx – Infantile Epilepsy Panel
    • Gene Dx – Childhood Onset Epilepsy Panel
    • Greenwood Genetic Center Diagnostic Laboratories – NGS Epilepsy/Seizure Panel
    • Prevention Genetics – Early Infantile Epileptic Encephalopathy, Recessive NextGen Sequencing (NGS) panel
    • Prevention Genetics – Early Infantile Epileptic Encephalopathy NextGen Sequencing (NGS) Panel

    Sequencing Panels that include GATM

    • Ambry Genetics – Comprehensive Epilepsy Testing (EpiNext)
    • Courtagen Life Sciences – epiSEEK Focus
    • Courtagen Life Sciences – nucSEEK Comprehensive Sequence Analysis of the Nuclear Mitochondrial Exome
    • Emory University – Epilepsy and Seizure Disorders Panel
    • Emory University – Neurology: Sequencing Panel
    • Fulgent Diagnostics – Epilepsy NGS Panel
    • Fulgent Diagnostics – Nuclear-Mito NGS Panel
    • GeneDx – Comprehensive Epilepsy Panel
    • GeneDx – Childhood Onset Epilepsy Panel
    • Greenwood Genetic Center Diagnostic Laboratories – NGS Epilepsy/Seizure Panel

    Sequencing Panels that include SLC6A8

    • ARUP – X-Linked Intellectual Disability Panel
    • Courtagen Life Sciences – devSEEK Sequence Analysis for Neurodevelopmental Disorders, Developmental Delay, Intellectual Disability, Autism Spectrum Disorders
    • Courtagen Life Sciences – nucSEEK Comprehensive Sequence Analysis of the Nuclear Mitochondrial Exome
    • Fulgent Diagnostics – Intellectual Disability NGS Panel
    • Fulgent Diagnostics –Nuclear-Mito NGS Panel
    • InVitae – Early Infantile Epileptic Encephalopathy Panel
    • Transgenomic – Autism Spectrum Disorder/Intellectual Disability/Multiple Congenital Anomalies NGS Panel
    • University of Chicago – Comprehensive Non-Specific ID Sequencing Panel

    Sequencing Panels that include all three (GAMT, GATM and SLC6A8)

    • Courtagen Life Sciences – epiSEEK Infancy and Childhood Epilepsy Panel
    • Courtagen Life Sciences – devACT Clinical Management Panel, Developmental Delay, Intellectual Disability, Autism Spectrum Disorders
    • GeneDx – Comprehensive Mitochondrial Nuclear Gene Panel
    • GeneDx – Combined Mito Genome Plus Mito Nuclear Gene Panel
    • InVitae – Epilepsy Panel
    • Transgenomic – NuclearMitome
    • Transgenomic – Comprehensive Epilepsy Evaluation NGS Panel
    • University of Chicago – Epilepsy Exome Panel

    *Whole Exome Sequencing (WES) is also available through many labs, and this test should also detect all three creatine deficiency syndromes.

Inclusion of particular professionals, services, products, or organizations does not imply endorsement by the ACD.