Alabama HIPP Program

The Alabama HIPP Program is designed to save money for Medicaid families with high health care costs by eliminating most out-of-pocket medical expenses for qualifying Medicaid recipients. The program also helps Medicaid recipients by reimbursing a policyholder for the cost of health insurance provided by an employer or COBRA. In some cases, recipients may qualify to receive reimbursement for the cost of a family health insurance policy premium.

Alabama Lifespan Respite Resource Network

Alabama Lifespan Respite Resource Network® (Alabama Respite) is a statewide program of United Cerebral Palsy of Huntsville and Tennessee Valley, Inc. (UCP Huntsville). 866-RESTALA (866-737-8252) is Alabama Respite’s toll free number for easy access for caregivers and providers seeking additional information.

Alabama Parent Education Center

The Alabama Parent Education Center (APEC) is a non-profit 501c3, organized in 2002 by Alabama parents, educators, and professionals. APEC provides parents with training, information, and support to help them become meaningful participants in their children’s education and lives. APEC supports families particularly those underserved including minority, low-income, and those with children with disabilities.

Alabama Rare

Alabama Rare is a grassroots organization uniting Alabama around the rare disease population. It acts to bring support for individuals & families, educate the broader community, bring awareness to the population’s needs, and advocate for necessary change to improve healthcare delivery. It aims to celebrate what we have in our backyard, and collaborate with stakeholders to move rare disease delivery of care forward.

Alabama Rare Disease Advisory Council

The Alabama Rare Disease Advisory Council supports people with rare disease and their families. Established in 2017 by Alabama Governor Kay Ivey, the RDAC serves as an advisory body to the governor and the Alabama Legislature. Their focus is on research, diagnosis, treatment, and education regarding rare diseases and their economic impact on the state. The Council comprises 17 members representing distinct areas of expertise in medicine, research, advocacy, and government policy. The governor nominates each member to fulfill a three-year term of service. Alabama RDAC Resource Manual.

Alabama State Department of Education

Through leadership and service, the vision of Special Education Services (SES) is to foster positive educational outcomes for all students with special needs.​

Baby’s First Test

Baby’s First Test is the nation’s newborn screening education resource center for families and health professionals. Centered on real experiences navigating newborn screening, Baby’s First Test provides up-to-date information, support, and services for families and education,  materials, and resources about newborn screening at the local, state, and national levels. 

Children’s Rehabilitation Services

The mission of Children’s Rehabilitation Service is to enable children and youth with special health care needs and adults with hemophilia to achieve their maximum potential within a community-based, culturally competent, family-centered, comprehensive, coordinated system of services.

Compass Nurse Consultants, LLC

Women’s Health Advocacy Consultants equipping women with the skills they need to advocate for their personal health while gaining confidence and understanding through patient empowerment coaching.

Cover Alabama

The Cover Alabama Coalition is a nonpartisan alliance of advocacy groups, businesses, community organizations, consumer groups, health care providers and religious congregations advocating for the state of Alabama to provide quality, affordable health coverage to its citizens and implement a sustainable health care system.  

Early Intervention

Created as Part C of the Individuals with Disabilities Education Act (IDEA), Alabama’s Early Intervention System (AEIS) is the beginning of Pre-K services for children with disabilities and developmental delays; school readiness is its sole function. AEIS provides support and services for infants and toddlers birth through age 2 (0 to 36 months of age) who have a medical diagnosis that can delay normal development or who have a developmental delay causing the child to not meet developmental milestones.

EveryLife Foundation for Rare Diseases

The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit dedicated to advancing the development of treatment and diagnostic opportunities for rare disease patients through science-driven public policy. It does not speak for patients. It provides the training, education, resources and opportunities to make their voices heard. By activating the patient advocate, we can change public policy and save lives.

Expecting Health

Expecting Health shares science-based and policy-informed information that reflects the lived experiences of individuals and their families. This is done through the power of relationships; convening the top experts; working with key leaders in health; and engaging with families and communities at the center of the conversation.

National Genetics Education and Family Support Center: The Family Center encourages patient-centered outcomes by supporting individuals and families with genetic conditions to better engage with healthcare services

The Newborn Screening Family Education Program: The Newborn Screening Family Education Program is dedicated to developing opportunities for all families to learn about newborn screening and to creating educational and training resources that build confidence in families to become leaders in the newborn screening system.

Global Genes

Global Genes’ mission is to connect, empower and inspire the rare disease community. Guided by it’s values – our passion. It’s team is united by the determination to support the rare disease community and provide what patients and advocates need to take action and thrive. It envisions a globally connected community equipped to eliminate the challenges of rare disease.

Hugh Kaul Precision Medicine Institute

Our aim is to enhance the delivery of precision medicine by assembling and supporting UAB researchers and clinicians in an interdisciplinary program aimed at discovering and applying new knowledge. Precision medicine is a concept reshaping the way we think about human health, diagnosis and treatment of disease. It focuses on individual patients to understand how their lifestyles, behavior, environment and genetics interact to affect their health. More importantly, this allows a systematic approach to integrate these factors into the prevention, diagnosis and treatment of disease tailored to the individual patient. Specifically to rare disease, precision medicine seeks to end the diagnostic odyssey while developing precisely targeted treatments based on a patient’s unique genetic makeup.

Jamal’s Helping Hands

Jamal’s Helping Hands provides client-focused support to patients and their families dealing with a chronic illness. It helps these patients and families navigate the many and difficult travails of today’s healthcare industry.  Services include various resources and educational information to help you better manage your loved-one’s healthcare. It is our goal to enhance the quality of our client’s lives and to make things easier for their families. 

Kerley’s Special Touch

Medical Equipment & Supplies | 4851 Whitesburg Dr., Suite D2 | Huntsville, AL 35802 | Phone: 256-519-2386 | Toll Free: 866-285-9461 |

Madison 310 Board

Madison County 310 Board serve individuals with intellectual disabilities in Madison County, Alabama. Madison County 310 Board (MC310) is the single point of entry for individuals with Intellectual Disabilities seeking waiver services or additional resources. In addition, MC310 provides service coordination for individuals residing in Madison County and currently on the ID/LAH Waiver. If you are interested in obtaining waiver services, you must first call: 1-800-361-4491 to begin the waiting list application process.

Matus Law Group

The Matus Law Group serve the residents of New Jersey in matters of estate planning and real estate law. In addition to general estate planning, they specialize in estate planning for clients who have a family member with special needs. Having firsthand experience and understanding of special needs families, Matus Law is dedicated to helping special families protect the future of their loved ones.  

Medicaid Disabled & Elderly Health Program

The Disabled & Elderly Health Programs Group (DEHPG) leads the Center’s work on Medicaid coverage and care coordination for the elderly and individuals with disabilities. This includes initiatives to promote community-based care options and to enhance the availability of long-term services and supports. DEHPG also manages the Medicaid prescription drug benefit and manufacturer rebates, and oversees benefits and managed care delivery system issues across the Medicaid program, including development of the new alternative benefit plans (ABPs) associated with the Affordable Care Act.

The Alabama Elderly and Disabled Waiver is designed to provide services to allow elderly and/or disabled individuals who would otherwise require care in a nursing facility to live in the community. This waiver is operated by the Alabama Department of Senior Services.

National Genetics Education and Family Support Center

The National Genetics Education and Family Support Center (Family Center) works to increase access to genetic services by promoting and strengthening family engagement in the genetic healthcare delivery system. The Family Center supports the federally funded National Coordinating Center and the seven Regional Genetics Networks (RGNs) to improve access to quality genetic services and to reach medically underserved populations.

National Organization for Rare Disorders (NORD)

NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.  NORD, along with its more than 300 patient organization members,  is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

National Society of Genetic Counselors

The National Society of Genetic Counselors (NSGC) offers the Find a Genetic Counselor directory with access to over 3,300 genetic counselors (US and Canada). The NSGC Find A Counselor directory is not a referral service but rather a service to provide an up-to-date list of NSGC members. The NSGC makes no representation or warranty about the professional skills of those genetic counselors listed in the directory, nor does the NSGC accept or assume any responsibility for the services they provide.

Project Sweet Peas

Project Sweet Peas’ mission is to empower and support families of fragile infants and to inspire hope through remembrance for those affected by pregnancy and infant loss. Project Sweet Peas – Alabama provides support to Neonatal Intensive Care Units in the Huntsville and Birmingham areas.  We support families with a child in the NICU and families who have experienced the loss of a child. 

Rare Care

The National Organization for Rare Diseases (NORD) has provided assistance programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. These programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists.

Rare Disease Legislative Advocates

Rare Disease Legislative Advocates is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations.

Smith Family Clinic for Genomic Medicine

The Smith Family Clinic for Genomic Medicine, LLC., a wholly-owned subsidiary of HudsonAlpha Institute for Biotechnology, has been established to diagnose patients with undiagnosed and misdiagnosed diseases. The clinic’s mission is not only to help find answers but also to give patients the best clinical care and a positive medical experience.

The Assistance Fund

The Assistance Fund is an independent charitable patient assistance organization that helps patients and families facing high medical out-of-pocket costs by providing financial assistance for their copayments, coinsurance, deductibles, and other health-related expenses.

The Genetic and Rare Diseases Information Center (GARD)

The Genetic and Rare Diseases Information Center (GARD) is a program of the National Center for Advancing Translational Sciences (NCATS) and is funded by the National Institutes of Health (NIH). GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.

TRIS Project

The Tracking Rare Incidence Syndromes (TRIS) project seeks to increase the knowledge base on rare incidence trisomy conditions, and to make this information available to families and interested educational, medical and therapeutic professionals. A critical part of the TRIS project is dissemination of The TRIS Survey. The survey is used to collect and analyze data focusing on common medical conditions, developmental milestones, therapeutic needs, family-related concerns, and demographic data of families with a child (living or deceased) with a rare trisomy condition. Use the Pre-Enrollment request form to sign up to complete the TRIS Survey. 

UAB Department of Genetics

The UAB Department of Genetics offers comprehensive genetic services for children and adults and we offer comprehensive prenatal services. Whole Genome Sequencing (WGS) Application

UAB Undiagnosed Diseases Program (UDP)

The UAB Undiagnosed Diseases Program (UDP) seeks to meet the needs of patients with severe chronic medical conditions for whom a diagnosis has not been made. The UDP team is led by four UAB Medicine faculty physicians and also includes a certified genetic counselor and two clinical nurse coordinators. UAB physicians from various medical and pediatric subspecialties serve as consultants and provide their expertise in each case as necessary. Additional information (PDF).

UCP Hearts

UCP’s HEARTS program offers vouchers for respite services to parents of children with disabilities up to age 19, parent education and support, and community awareness activities. The purpose of the HEARTS program is to reduce the stress of fulltime caregiving duties associated with raising a child with a disability or with special health care needs, strengthen families, and reduce social isolation.

United Way 211 Community Resources

211 is a free, confidential referral and information helpline and website that connects people of all ages and from all communities to the essential health and human services they need, 24 hours a day, seven days a week – whether financial, domestic, health, or disaster-related. 211 connects you to a community resource specialist in your area who can put you in touch with local organizations that provide critical services that can improve—and save—lives.

Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC)

Chloe Barnes Advisory Council on Rare Diseases

Missouri HealthNet Rare Disease Advisory Council

North Carolina Rare Disease Network

Pennsylvania Rare Disease Advisory Council

Reference Articles

Barriers to Rare Disease Diagnosis, Care and Treatment in the U.S.

Guardianship 101

Medicaid Chart Book

Trisomy 18 Head Circumference Chart

Trisomy 18 Height Chart

Trisomy 18 Weight Chart

The National Economic Burden of Rare Disease Study Summary Report

Turning Mealtimes Into Learning Opportunities