Office of Newborn Screening

Additional Resources – Disorder Support Groups

This index provides a listing of available resources related to newborn screening including guidelines, brochures and forms, process documents, and FAQs. The Arizona listing contains family centered resources, non-profits agencies serving infants with metabolic and genetic disorders, those who are deaf or hard of hearing, as well as intergovernmental agencies serving the special needs of families.

• Newborn Screening and Genetics
• Disorder Information
• Disorder Support Groups
• Newborn Screening Advocates
• Arizona Resources

Disorder Support Groups

Endocrine Disorders

• American Thyroid Association
  A professional society of physicians and scientists who specialize in the research and treatment of thyroid diseases.
• The Magic Foundation
  A non-profit organization that provides support services for the families of children with disorders that affect a child's growth (including hypothyroidism and CAH).
• Cares Foundation (Congenital Adrenal Hyperplasia Research Education and Support)
  A foundation providing information, advocacy and support for individuals with CAH. The CAH Education and Support Network includes message boards and support groups for people with CAH.
• National Adrenal Diseases Foundation (NADF)
  A non-profit organization providing support, information and education to individuals with diseases of the adrenal glands (including CAH).

Hemoglobinopathies

• Sickling Disorders
  • Sickle Cell Information Center
    Housed in Atlanta, GA, the Center provides sickle cell patient and professional education, news, research updates and resources.
  • Sickle Cell Thalassemia Patients Network
    A New York-based support organization for people with sickle cell disease, thalassemia and other hemoglobin disorders.
  • Information Center for Sickle Cell and Thalassemic Disorders
    A website from Harvard University that provides current information on sickle cell disease, thalassemia and disorders of iron metabolism.
  • Sickle Cell Disease Association of America
    An advocacy organization promoting a search for a cure for sickle cell disease and an improvement in the quality of health, life and services for those affected by sickle cell disease and related conditions.
  • American Sickle Cell Anemia Association
    A United Way Agency of Cleveland, Ohio that provides services to individuals and families at risk for sickle cell disease.
  • National Coordinating and Evaluation Center for the Sickle Cell and Newborn Screening Program
    SCDAA serves as the National Coordinating and Evaluation Center (NCEC) for the projects of the Newborn Screening Sickle Cell Disease initiative of HRSA/MCHB with goals of increasing knowledge about sickle cell disease, strengthening partnerships between HRSA funded community programs and partners, including state newborn screening programs and improving the quality of follow-up activities of HRSA funded projects.
• Thalassemias
  • Cooleys Anemia Foundation
    A support organization for people with various forms of thalassemia, including Cooleys anemia or thalassemia major.

Metabolic Disorders

• Biotinidase Deficiency
  • Biotinidase Deficiency Family Support Group
    A non-profit, volunteer organization that supports those affected by biotinidase deficiency by providing a forum to exchange information among affected individuals and with medical professionals.
• Galactosemia
  • Parents of Galactosemic Children, Inc. (PGC)
    A national, non-profit, volunteer organization providing information, support and networking opportunities to families affected by galactosemia.
• PKU
  • National PKU Alliance
    Provides research, support, education and advocacy while seeking a cure for PKU.
  • Children's PKU Network
    A non-profit organization promoting public awareness, education and direct assistance to help people with PKU and other metabolic disorders reach their full potential.
  • National PKU News
    A non-profit organization providing up-to-date, accurate news and information to families and professionals dealing with phenylketonuria.
  • PKU Online Community
    An online resource learn about PKU, managing diet, medication and other resources as well as a forum to share in chats, blogs and other programs.
  • PKU Toolkit
    A guide for teens or young adults with PKU.
• MSUD
  • The MSUD Family Support Group
    Provides support and personal contact for those with MSUD, distributes information and raises public awareness of MSUD, supports newborn screening and research for MSUD.

Fatty Acid Oxidation Disorders

• FOD Family Support Group
  Provides emotional support, information about living with these disorders and medical updates on new developments in screening, diagnosis, research and treatment.
• United Mitochondrial Disease Foundation
  Promotes and funds research and education for the diagnosis, treatment and cure of mitochondrial disorders and provides support to affected individuals and families.

Organic Acid Disorders

• Organic Acidemia Association (OAA)
  The Organic Acidemia Association offers support to families and Practioners dealing with metabolic disorders.
• International Organization of Glutaric Aciduria (IOGA)
  An international non-profit organization engaged in patient advocacy and support for individuals with GA-1.
• Propionic Acidemia Foundation
  A non-profit organization funding research and providing information and support for families and medical professionals dealing with propionic acidemia.

Urea Cycle Disorders

• National Urea Cycle Disorders Foundation
  A non-profit organization providing information and support for families of children with Cuds (including citrulline mi a and architectonics acidemia).

Cystic Fibrosis

• Cystic Fibrosis Foundation
  The leading organization in the US devoted to cystic fibrosis. It is a nonprofit donor-supported organization that funds and accredits CF care centers, advocates for CF research and provides families with information and resources such as Living with Cystic Fibrosis.
• Internet Community for CF Patients and families

Hearing Loss

• National Center for Hearing Assessment and Management (NCHAM)
  The Utah State University national resource center for the implementation and improvement of EHDI systems and the developer of the Hi*Track data management system.
• Hear and Now
  From NCHAM, a resource for parents.
• Hands & Voices
  A support organization for families of children who are deaf or hard of hearing with an Arizona chapter. Guide-By-Your-Side (GBYS) is a Hands & Voices program that provides emotional support and specialized knowledge from trained parents of children who are deaf or hard of hearing.
• Joint Commission on Infant Hearing (JCIH)
  Composed of representatives from the American Academy of Pediatrics, the American Academy of Otolaryngology and Head and Neck Surgery, the American Speech Language Hearing Association, the American Academy of Audiology, the Council on Education of the Deaf, and Directors of Speech and Hearing Programs in state health and welfare agencies. The committees primary activity is publication of position statements on EHDI.
• My Baby's Hearing
  A website from the Boys Town National Research Hospital supported by the National Institute for Deafness and Communication Disorders (NIDCD).
• National Institute on Deafness and Other Communication Disorders
  One of the Institutes that comprise the National Institutes of Health (NIH) and supports biomedical and behavioral research in the processes of hearing, balance, smell, taste, voice, speech and language.