This page lists all external resources linked or referenced across the SETD5 Syndrome Research & Resources website. Sources were selected because they are publicly accessible, reputable, and useful to families navigating a SETD5 Syndrome diagnosis. Inclusion does not imply endorsement of everything on a linked site. Content on this site is intended for general informational purposes only. It is not medical, legal, or financial advice. Always verify information with your care team and relevant professionals.
SETD5 & Rare Disease Organizations
Primary organizations, registries, and databases focused on SETD5 Syndrome and rare diseases generally.
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SETD5
The primary research registry for SETD5. Includes a gene guide, family navigation resources, quarterly data reports, and free genetic counseling for enrolled families.
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SETD5
The Online Mendelian Inheritance in Man (OMIM) entry for SETD5-related neurodevelopmental disorder. Includes clinical synopsis, molecular genetics, and literature references.
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SETD5
The NIH ClinVar database of clinically interpreted SETD5 genetic variants, including pathogenicity classifications under ACMG/AMP guidelines.
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SETD5
The NIH Genetic and Rare Diseases Information Center (GARD) overview of intellectual disability and facial dysmorphism syndrome due to SETD5 haploinsufficiency.
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SETD5
A comprehensive human gene database entry for SETD5, including gene function, associated diseases, and genomic location.
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SETD5
A family-focused booklet on SETD5-related conditions produced by Unique, a UK-based charity supporting people with rare chromosome and gene disorders.
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SETD5
A peer support community for families of individuals with SETD5 Syndrome.
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Rare Disease
A leading US rare disease advocacy organization providing patient education, disease information, and support services.
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Rare Disease
A rare disease advocacy organization connecting patients and families with resources, community, and support.
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Rare Disease
A UK-based charity that produces family guides and connects families affected by rare chromosomal and gene conditions.
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Rare Disease
An annual awareness campaign held on the last day of February, dedicated to raising awareness for rare diseases and their impact on patients and families.
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Rare Disease
An online patient and caregiver community for people living with rare and chronic conditions.
Published Research & Databases
Peer-reviewed articles, preprints, and databases referenced in the SETD5 research summary. Research summaries on this site are original paraphrases; all papers are credited with titles and links.
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Research
The National Library of Medicine's biomedical literature database. All research articles cited on this site can be found and verified through PubMed.
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Research
Peer-reviewed article exploring the relationship between SETD5 and immune system function.
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Research
Open-access peer-reviewed genetics article on SETD5, published in the MDPI journal Genes.
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Research
A preprint (not yet peer-reviewed) examining SETD5 biology. Included on the research page with a notation that it is a preprint.
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Research
A doctoral dissertation on SETD5 from the University of Texas Graduate School of Biomedical Sciences at Houston.
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Research
Peer-reviewed article in the journal Molecular Autism examining SETD5-related neurodevelopmental features.
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Research
Peer-reviewed clinical genetics article on SETD5 published in Clinical Genetics (Wiley).
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Research
Research article examining the role of SETD5 in cancer biology, published in Cancer Cell.
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Research
Peer-reviewed article in the European Journal of Human Genetics on SETD5 and intellectual disability.
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Research
Peer-reviewed article in Nature Neuroscience on the neurodevelopmental role of SETD5.
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Research
Peer-reviewed article in Translational Psychiatry examining SETD5 and psychiatric phenotypes.
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Research
A conference abstract on SETD5 presented at a European paediatric endocrinology meeting.
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Research
Simons Foundation Autism Research Initiative (SFARI) grant summary for research probing autism-related phenotypes in SETD5 conditional knockout mice.
Special Education & Advocacy
Resources referenced in the School & IEP Guide, including federal law, advocacy organizations, and parent-facing guides.
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Education
The official government resource for IDEA, including the full text of the law, regulations, and policy guidance. The primary legal basis for special education rights described on this site.
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Education
Federally funded centers in every state offering free guidance to parents navigating special education, IEPs, and disability rights. Operated by the Office of Special Education Programs (OSEP).
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Education
Plain-language guidance on IEPs, 504 plans, and special education advocacy for parents of children with learning and thinking differences. Includes sample IEPs and 504 plans.
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Education
Real-world IEP examples written for teachers, administrators, and parents -- helpful for understanding what a thorough IEP looks like in practice.
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Education
A widely used resource for special education law and advocacy, including articles, a state-by-state advocate directory, and books on IEP law and parent rights.
Government Benefits & Financial Programs
Federal and state programs referenced in the Disability Discounts Guide, including benefits finders, insurance programs, and financial assistance resources.
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Benefits
The federal SSI program providing monthly payments to people with disabilities who have limited income and resources, including children.
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Benefits
Federal and state health coverage for people with disabilities and low-income families. Eligibility and covered services vary by state.
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Benefits
Federal health insurance program that covers people under 65 who have received Social Security Disability Insurance (SSDI) for at least 24 months.
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Benefits
Information on ABLE accounts -- tax-advantaged savings accounts for people with disabilities established under the Achieving a Better Life Experience (ABLE) Act.
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Benefits
The official US government benefits website, with information on federal benefit programs and eligibility tools.
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Benefits
A free information and referral service connecting people with local health and human services programs, including disability-related support.
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Benefits
A federal program administered by HHS that helps low-income families with heating and cooling energy costs.
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Benefits
A federal program providing reduced-cost phone and internet service to income-eligible households, including SSI recipients.
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Benefits
A federal tax credit that may offset the cost of care for a child or dependent with a disability.
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Benefits
A federal tax credit available to individuals who are permanently and totally disabled and meet income thresholds.
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Benefits
State Medicaid waivers that fund home and community-based supports for people with disabilities, including California, Texas, Florida, and New York programs.
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Benefits
The federal health insurance marketplace for individuals who do not qualify for Medicaid but need coverage options, including disability-related special enrollment periods.
Healthcare & Prescription Resources
Programs referenced in the Disability Discounts Guide for reducing out-of-pocket healthcare and prescription costs.
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Medical
A directory of pharmaceutical patient assistance programs that provide free or reduced-cost medications to qualifying patients.
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Medical
A nonprofit that provides information on programs to help people pay for medications and healthcare, including drug discount cards and patient assistance programs.
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Medical
A free prescription savings tool that compares pharmacy prices and provides discount coupons. Widely used to reduce out-of-pocket medication costs.
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Medical
A federal resource for finding low-cost or free health and dental coverage for children with disabilities through Medicaid and CHIP.
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Medical
A directory of accredited dental schools offering reduced-cost dental care, which may include services for patients with special needs.
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Medical
Lions Clubs provide free or reduced-cost vision care and eyeglasses to individuals in need, including people with disabilities.
Recreation & Accessibility Programs
Disability access programs, national park passes, theme park accommodations, and inclusive recreation opportunities referenced in the Disability Discounts Guide.
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Recreation
A free lifetime pass to US national parks and federal lands for people with permanent disabilities. Available in person at fee-charging areas or by mail.
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Recreation
Federal guidance on ADA paratransit services, which provide comparable transportation for individuals with disabilities who cannot use fixed-route bus or rail systems.
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Recreation
Amtrak's 15% discount for passengers with disabilities, with a companion traveling at the same reduced fare.
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Recreation
Disney's accommodation program for guests who have difficulty waiting in a conventional queue due to a disability.
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Recreation
Universal's accessibility accommodation for guests with cognitive or physical disabilities that affect their ability to wait in standard queues.
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Recreation
Six Flags' accessibility accommodation program for guests with disabilities.
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Recreation
SeaWorld's accessibility information and accommodations for guests with disabilities.
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Recreation
A global sports organization offering free training and competition in a variety of sports for individuals with intellectual disabilities.
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Recreation
4-H youth development programs with accommodations for youth with disabilities.
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Recreation
BSA programs and resources for Scouts with disabilities, including alternative advancement methods.
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Recreation
Girl Scouts resources and accommodations for girls with disabilities to participate fully in programming.
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Recreation
Easter Seals operates inclusive camping and recreation programs for children and adults with disabilities across the country.