The E.WE Foundation is committed to providing a comprehensive list of resources for families navigating the challenges of rare disease and medically complex diagnoses. It is important to note that this list is not exhaustive and we encourage you to conduct your own research and exercise discretion when seeking resources for your specific needs.
The E.WE Foundation does not endorse any individual, organization, or service provider mentioned on the provided list of resources. It is important to recognize that interactions between individuals seeking support services and the organizations listed are independent of the E.WE Foundation, and the E.WE Foundation will not be held responsible for any outcomes resulting from such interactions.
Advisory Committee on Heritable Disorders in Newborns and Children
The Advisory Committee on Heritable Disorders in Newborns and Children (Committee) was established under the Public Health Service (PHS) Act, 42 U.S.C. 217a: Advisory councils or committees and Title XI § 1111 (42 U.S.C. § 300b-10). The Committee recommends that every newborn screening program include a Uniform Screening Panel that screens for 35 core disorders and 26 secondary disorders; they based the disorders’ selection on the Newborn Screening: Towards a Uniform Screening Panel and System. The Committee also advises the Secretary, U.S. Department of Health and Human Services on the most appropriate application of universal newborn screening tests, technologies, policies, guidelines, and standards.
Alabama Cohosh Collaborative Reproductive Health
The mission of the Alabama Cohosh Collaborative Reproductive Health is to offer quality improvement and reproductive health equity within the state of Alabama. We seek to increase access to reproductive health care, improve the quality of care, and reduce health disparities in Alabama.
Alabama Department of Child Abuse and Neglect Prevention, Children’s Trust Fund of Alabama
The Alabama Department of Child Abuse and Neglect Prevention, The Children’s Trust Fund, secures resources to fund evidence-based community programs committed to the prevention of child maltreatment. We advocate for children and the strengthening of families.
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 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.
Restoring hope and health to children and adults by providing free transportation to medical care and humanitarian needs. Angel Flight is committed to transforming patients’ lives with free air transportation so distance is never a barrier to accessing lifesaving medical care.
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.
The Child Neurology Foundation serves as a collaborative center of education, resources, and support for children and their families living with neurologic conditions, and facilitate connection with medical professionals who care for them. Their expanding network of patients and caregivers, volunteers and advocates, researchers and clinicians is committed to helping one another along the path that leads to the best quality of care — and the highest quality of life—for every child.
Child Welfare Information Gateway
Child Welfare Information Gateway, a service of the Children’s Bureau, Administration for Children and Families, U.S. Department of Health and Human Services, promotes the safety, permanency, and well-being of children, youth, and families by connecting child welfare, adoption, and related professionals as well as the public to information, resources, and tools covering topics on child welfare, child abuse and neglect, out-of-home care, adoption, and more.
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.
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.
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.
The Epilepsy Foundation Alabama’s mission is to lead the fight to overcome challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives by connecting people to treatment, support and resources; leading advocacy efforts; funding innovative research and the training of specialists; and educating the public about epilepsy and seizure first aid.
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 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.
Genetic and Rare Diseases Information Center
The Genetic and Rare Diseases Information Center (GARD) is a program of the National Center for Advancing Translational Sciences (NCATS) and is funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.
Global Genes’ mission is to connect, empower and inspire the rare disease community. Guided by it’s values – our passion. Its 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.
Help Hope Live supports community-based fundraising for people with unmet medical expenses and related costs due to cell and organ transplants or catastrophic injuries and illnesses. These efforts play a critical role in helping clients access the care and equipment they need to heal, live, and thrive.
Helping Survivors is on a mission to help heal, educate, and empower people who have been impacted by sexual abuse, assault, or harassment. The goal of Helping Survivors is to help people who have been impacted by sexual assault and abuse get the resources and assistance they need and deserve.
Hugh Kaul Precision Medicine Institute
The aim of Precision Medicine Institute 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 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 | kmesi@kerlymedical.com
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.
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 Center for Advancing Translational Sciences
The National Center for Advancing Translational Sciences (NCATS) at the National Institutes of Health (NIH) was officially established in fiscal year 2012 to transform the translational science process so that new treatments and cures for disease can be delivered to patients faster. NCATS, one of 27 Institutes and Centers (ICs) at NIH, strives to develop innovations to reduce, remove or bypass costly and time-consuming bottlenecks in the translational research pipeline in an effort to speed the delivery of new drugs, diagnostics and medical devices to patients.
National Children’s Advocacy Center
The NCAC models, promotes, and delivers excellence in child abuse response and prevention through service, education, and leadership.
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 Maternal Mental Health Hotline
The National Maternal Mental Health Hotline provides 24/7, free, confidential support before, during, and after pregnancy. The Hotline offers callers: phone or text access to professional counselors, real-time support and information, response within a few minutes, 24 hours a day, 7 days a week, resources, referrals to local and telehealth providers and support groups, culturally sensitive support, counselors who speak English and Spanish, and interpreter services in 60 languages.
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.
The Parenting Assistance Line (PAL) is for anyone who wants information and support in becoming a more confident parent. PAL can provide helpful assistance to moms, dads, grandparents, caregivers, and anyone who wants to nurture a happy, healthy family! Need a sympathetic ear? Call or text 866-962-3030, chat online with parenting experts, or browse the wealth of parenting resources found on their website.
Patient AirLift Services (PALS) is a nonprofit that arranges free flights for medical patients requiring medical diagnosis, treatment or follow-up who cannot afford or are unable to fly commercially. PALS also arranges volunteer flights for family members of patients as compassionate missions, to ensure patients have support when they are away from home for long periods.
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.
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.
The Reproductive Outreach and Education Center (ROE Center) is a 501c3 organization committed to reproductive justice by providing support to pregnant people in Alabama and nearby Southern states in order to empower individual choice about whether, how, and where birth occurs. The ROE Center supports both patient services for individuals accessing comprehensive reproductive health care and professional training for the next generation of clinicians in comprehensive reproductive healthcare.
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.
Southeast Regional Genetics Network (SERN)
The goal of the Southeast Regional Genetics Network (SERN) is to improve health equity and health outcomes in individuals with genetic conditions; reduce morbidity and mortality caused by genetic conditions (including congenital and metabolic disorders); and improve the quality of coordinated and comprehensive genetic services to children and their families.
The Staging Transition for Every Patient (STEP) program helps young adults with complex and chronic health conditions transfer from pediatric care to adult care. The STEP program helps with the transition to adult care, which can be difficult for both patients and their families due to medical and insurance changes. The STEP program includes a primary care clinic for patients age 18 and older that provides medical care, referrals to specialists, and an individualized transition plan for each patient and family. The program also works with adolescent patients age 14 and older to begin preparing them for adult health care.
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 Caring House provides a safe place for children ages 3-18 and their families to cope with the death of a loved one and share their grief with others. They recognize that grief is a natural reaction to the loss of a loved one. The duration and intensity of grief is unique for each individual. Within each of us is the natural capacity to heal, and acceptance and caring facilitate that healing process. The Caring House is a member of the National Alliance for Grieving Children.
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.
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.
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’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.
UCP of Huntsville & Tennessee Valley
UCP of Huntsville & Tennessee Valley, Inc. provides thousands of hours of service annually to clients ages birth through the lifespan at little or no cost to individuals, families or professionals. UCP services and support are provided by 26 full-time and six part-time health, education and business professionals.
The UCP Therapy Center offers physical, occupational, and speech-language therapies through Early Intervention (EI) and Children’s Therapy Services outpatient programs, as well as educational and social services to children with disabilities and their families in Madison, Marshall, Morgan, Limestone, Jackson and Cullman counties of North Alabama. These programs serve clients with cerebral palsy as well as those who represent 180 additional diagnoses.
The UCP Training Center provides statewide Alabama Lifespan Respite family caregiver respite services, statewide Childcare Enhancement with a Purpose quality childcare inclusion training services, statewide Tourism ALL-a-Bama autism-friendly travel services, and houses the statewide First 5 Alabama and Help Me Grow Alabama programs’ North Alabama offices. These programs serve children and adults of all abilities, their caregivers, and the professionals who work alongside
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.
USA Children’s & Women’s Hospital Bridge Program
The goal of the Bridge Program is to ensure that pregnant patients and their families are fully educated on their infant’s diagnosis and the associated risks, what a NICU stay entails, and if necessary, end-of-life plans. The Bridge Program also provides a support group to allow these families to meet and share their stories, particularly those who have a history of multiple fetal losses. The program supports pregnant patients struggling with fetal anomalies, which are conditions that affect a fetus or embryo and may be fatal or cause ongoing health issues after birth.
Genetic Resources
Reference Articles & Materials
Alabama Rare Disease Advisory Council Resource Manual
Barriers to Rare Disease Diagnosis, Care and Treatment in the U.S.
Global Genes Rare Concierge – Patient Services
NORD Rare Disease Centers of Excellence
Trisomy 18 Head Circumference Chart
Turning Mealtimes Into Learning Opportunities
What Parents Say – Advancing Equity and Support
Financial Literacy Tools
Financial Literacy and Navigation in Rare Diseases
The National Economic Burden of Rare Disease Study Summary Report
The E.WE Foundation 