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Advancing Research.
Empowering Families.
Moving Forward.
We are a family-led nonprofit dedicated to supporting research for SETD5 Syndrome, a rare genetic condition, and building a global community of hope and action.
A Rare Genetic Condition with a Growing Community
SETD5 Syndrome is caused by changes (variants or deletions) in the SETD5 gene. This gene plays a critical role in brain development, and when it doesn't work as expected, it can affect many areas of development. Common features include intellectual disability, autism spectrum disorder, speech and language delays, and behavioral differences such as attention and hyperactivity challenges. SETD5 Syndrome can also lead to a range of physical symptoms, which vary from person to person.
In most reported cases, the change arises spontaneously (de novo), and there is no prior family history of the condition, though familial cases do occur. In some families, a parent carries the variant and may show no features of the syndrome at all, a phenomenon known as reduced penetrance. When a parent carries the variant, it can be passed to a child. SETD5 Syndrome was first described in 2014, and the global community of diagnosed individuals is still growing as genetic testing becomes more widespread.
Every person with SETD5 Syndrome is unique. This is a condition of beautiful complexity, and our mission is to fully understand it and support those living with it.
Science That Needs Funding
SETD5 Syndrome is still poorly understood. There are fewer than 75 published studies, no natural history data, and no established clinical care guidelines. Our role is to change that: by connecting with leading researchers, funding the studies that matter most, and building the infrastructure the field needs to move faster.
Every dollar we raise goes directly toward the research priorities we believe will have the greatest impact. Visit our research page to see what we are working toward and why.
The Faces Behind Our Mission
SETD5 Syndrome Foundation was built by parents who refused to wait. Here is why we do this work.
"We knew from the very beginning that something was different about our son. After six months of fighting to have our concerns validated and nearly two years waiting for a diagnosis, we found ourselves navigating the unknown world of SETD5 Syndrome largely on our own. Like many families, we became our child's fiercest advocates and accidental experts in a condition few people understand. A Foundation that provides guidance, support, and connection for families affected by SETD5 Syndrome changes everything. No family should have to navigate it alone."
Support Our Work
We are building something that will matter for generations. Your support, in any form, helps us get there.
Note: Our 501(c)(3) application is pending. Donations are not yet tax-deductible.
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What Is SETD5 Syndrome?
SETD5 Syndrome is a rare genetic neurodevelopmental condition caused by a change (variant) in the SETD5 gene, located on chromosome 3p25.3. SETD5 haploinsufficiency (meaning one working copy of the gene instead of the usual two) disrupts normal development in ways that can affect cognition, behavior, communication, and physical features.
Research suggests that SETD5 may help regulate how other genes are switched on and off during development. When one copy does not function correctly, a range of developmental, behavioral, medical, and physical features have been observed in affected individuals. No two individuals are exactly alike, and severity varies widely.
Most reported cases occur as a de novo mutation, meaning the change arose spontaneously and was not inherited from either parent. However, inherited cases are thought to account for an estimated 10–15% of known cases, and this figure may be an undercount, as formal prevalence data are still emerging.
Two genetic concepts help explain the range of how SETD5 variants behave in families. Reduced penetrance means a parent carries the same pathogenic variant as their child but has no apparent clinical features themselves (the variant is "there" but not expressed). Variable expressivity means individuals with the same variant can be affected to very different degrees, from mild to more significant. Both are observed in SETD5 Syndrome, which can make inherited cases harder to identify and may contribute to the variant being underweighted during genetic evaluation.
Approximately 75+ individuals had been described in published case series as of 2025. However, the global community has grown to over 1,100 families worldwide, suggesting the true number of people affected is significantly higher than published figures reflect.
Quick Facts
What Does SETD5 Syndrome Look Like?
SETD5 Syndrome presents differently in every person. The spectrum is wide: some individuals have significant support needs, while others have mild or moderate features, and some do not have intellectual disability at all. Notably, some parents who carry a pathogenic SETD5 variant are themselves unaffected or only mildly affected. No two individuals are exactly alike.
Learning & Cognition
Intellectual disability, global developmental delay, working memory difficulties, and challenges with reading, writing, and numeracy.
Speech & Language
Speech and language delay commonly reported. Some individuals are minimally verbal; others use AAC. Expressive language is often more affected than comprehension.
Behavior & Emotional Regulation
ADHD features, anxiety, sensory sensitivities, autism spectrum features, and a preference for routine are commonly observed.
Social & Adaptive
Social communication challenges and reduced awareness of danger have been reported in some individuals.
Neurological & Motor
Low muscle tone (hypotonia), gross and fine motor delays, coordination difficulties, sleep disturbances, and epilepsy in some individuals.
Medical & Physical
May include feeding difficulties in infancy, growth concerns, vision or hearing impairment, and heart concerns present from birth in some individuals.
Important: Features listed are drawn from published case series and reflect commonly reported characteristics. This list is not exhaustive. Not every individual will have all of these, and no two people are exactly alike. This is for educational purposes only and is not a substitute for medical advice. Please consult with a qualified genetics specialist or developmental pediatrician for personalized guidance.
Other Names You May Encounter
SETD5 Syndrome appears under several different names in medical literature, databases, and research. All refer to the same underlying condition.
Formal clinical classification used in genetics literature and medical databases.
A variation of the formal medical classification used in some clinical records.
A descriptive name used by the NIH's Genetic and Rare Diseases Information Center (GARD), referencing the primary symptoms and genetic mechanism.
Broader, more accessible terms used by patient advocacy groups and registries such as Simons Searchlight.
A closely related condition in which a small piece of chromosome 3 is deleted, a region that includes the SETD5 gene. Researchers believe the core features are primarily caused by loss of SETD5, and the clinical literature significantly overlaps.
Related conditionSETD5 Syndrome Families Around the World
SETD5 Syndrome has been identified on six continents. Every highlighted country has at least one confirmed case, and the true global count continues to grow as genetic testing expands.
From "Something Is Different" to a Diagnosis
Many families travel a long road before receiving a diagnosis of SETD5 Syndrome. Understanding this journey can help families advocate effectively.
Developmental Concerns Are Noticed
Parents or a pediatrician notice developmental delays (often in speech, motor skills, or social development), typically in the first 1-3 years of life.
Referral to Specialists
A referral to a developmental pediatrician, neurologist, or geneticist follows. Initial testing (MRI, metabolic panels) may be inconclusive.
Genetic Testing
Most SETD5 variants are identified through whole-exome sequencing (WES) or whole-genome sequencing (WGS). Chromosomal microarray (CMA) can detect larger chromosomal deletions involving the SETD5 region but does not identify individual gene variants, so a normal CMA result does not rule out SETD5 Syndrome. Your genetics team will advise on appropriate testing.
Diagnosis Confirmed
A disease-causing change in the SETD5 gene, described on lab reports as "pathogenic" or "likely pathogenic," is identified. Parents receive a formal diagnosis, often a moment of grief and relief at once.
Finding Community & Next Steps
Connecting with SETD5 Syndrome Foundation and other families is one of the most meaningful steps after diagnosis. Many families also find it helpful to ask their genetics team about follow-up care, reach out to early intervention programs, and connect with school support services. You are not alone, and you do not have to figure this out by yourself.
Medical disclaimer: The SETD5 Syndrome Foundation does not provide individual medical advice, diagnosis, or treatment. Information on this website is educational only. Families should consult their own physician, geneticist, neurologist, genetic counselor, or other qualified medical provider regarding personal medical questions or care decisions.
Questions Families Often Ask
Newly Diagnosed? You Are Not Alone.
We are building a community where no family has to navigate a SETD5 Syndrome diagnosis alone. Reach out — we would love to hear from you.
Contact the FoundationFrom Discovery to Treatment
SETD5 Syndrome was only first described in scientific literature in 2014. The field is young, which means there is enormous potential for rapid progress with the right investment.
We support research by connecting families, identifying research priorities, building scientific partnerships, and helping lay the groundwork for future studies — across the full pipeline from understanding the basic biology of the SETD5 gene to developing and testing candidate therapies.
Family-centered research means patients and families have a voice in setting research priorities from the very beginning. That is not a nice-to-have for us. It is the point.
Our Research Priorities
Our role is to support the researchers doing the work — connecting with investigators, forming partnerships, and helping build the infrastructure the field needs to move faster.
Natural History Study
Supporting researchers to follow individuals with SETD5 Syndrome over time, tracking development, health outcomes, and quality of life across the lifespan. This is the foundation all future research depends on.
Patient & Variant Registry
Supporting the development of a structured, global database of everyone diagnosed with SETD5 Syndrome, capturing each person's specific genetic variant and clinical features to power every study that follows.
Family & Caregiver Quality of Life Study
Supporting research that documents the real-world impact of SETD5 Syndrome on families, with findings that can inform insurance advocacy, school supports, and policies that shape daily life.
Clinical Care Guidelines
Supporting the convening of physicians and specialists to establish consensus on how individuals with SETD5 Syndrome should be evaluated, monitored, and cared for across their lifetime.
Epilepsy Prevalence & Treatment
Seizures have been reported in SETD5 Syndrome, yet how commonly they occur, and whether they are being consistently recognized and diagnosed, is not well understood. We want to support research that establishes the true prevalence of epilepsy in SETD5 Syndrome, characterizes how it presents across individuals, and informs treatment approaches tailored to the underlying biology of the condition.
How Far We Have Come
The SETD5 Syndrome field has progressed rapidly in a short time. Here is the story of that progress.
SETD5 First Linked to Intellectual Disability
Early research identifies SETD5 variants in individuals with unexplained intellectual disability, a preliminary finding that would lead to the condition being formally characterized the following year.
SETD5 Syndrome Formally Described
Grozeva et al. publish the first paper formally characterizing SETD5 haploinsufficiency as a distinct syndrome.
First Family Support Group Formed on Facebook
Families from around the world connect for the first time, forming the community that would become the foundation of this organization.
First Mouse Model Validated
A mouse model carrying one changed copy of the Setd5 gene is validated, showing behavioral and neurological features similar to those seen in humans with the condition.
SETD5 Syndrome Foundation Formed
Families launch the foundation to accelerate research and provide community support to a growing global patient population.
Building Our Scientific Leadership
We are in the process of assembling a Scientific Advisory Board of leading researchers in neurodevelopmental genetics, epigenomics, and rare disease therapeutics. Our SAB will help guide our research priorities and ensure the work we support is rigorous and moves the field forward.
Are You a Researcher in This Space?
We welcome inquiries from scientists interested in SETD5 Syndrome. If you are working in neurodevelopmental genetics, epigenomics, or rare disease therapeutics, we would love to connect.
Get in TouchSupport the Science
We are building the partnerships, infrastructure, and community needed to move SETD5 research forward. Your support today is what makes that possible.
Our 501(c)(3) application is pending. Donations are not yet tax-deductible.
Learn How to Support Us Get Research UpdatesCurrent Research Opportunities
Clinical, EEG and Genetic Characterization of SETD5-Related Epilepsy
Families affected by SETD5-related epilepsy are invited to participate in an international research study being conducted by the Neuroscience Department at Meyer Children's Hospital IRCCS in Florence, Italy.
Researchers are seeking to better understand the clinical features, EEG patterns, and treatment response of epilepsy associated with variants in the SETD5 gene. Clinical information, EEG findings, and genetic data will be collected through participants' treating medical practitioners.
By participating, families can help advance understanding of SETD5-related epilepsy and contribute to research that may benefit affected individuals and families worldwide.
Contact the Research Team
Dr. Simona Balestrini · simona.balestrini@meyer.it
Dr. Alice Dainelli · alice.dainelli@meyer.it
Are You a Researcher?
If you are conducting research relevant to SETD5 Syndrome and would like to be listed here, we'd love to hear from you.
Get in TouchWe are not yet accepting donations while we await IRS approval of our tax-exempt status. Sign up below to be notified the moment giving opens — your support will make an immediate difference.
Help Us Build Something Lasting
The SETD5 Syndrome Foundation is in its early stages. We are currently working toward 501(c)(3) status, which means donations are not yet tax-deductible. If you would like to support our work as we build, we would love to hear from you.
Right now, the most meaningful thing you can do is connect with us, whether you want to contribute financially, volunteer your time, help spread the word, or simply stay in the loop as we grow. Every relationship we build in this early stage helps make the Foundation stronger.
If you are interested in donating now, please email us at info@setd5syndrome.org and we can discuss that option with you directly.
Once Our 501(c)(3) Is Confirmed
Research Funding
Gifts will go directly toward funding rigorous scientific research into SETD5 Syndrome — from understanding the biology to developing therapeutic strategies.
Family Programs & Events
Donations will support in-person family gatherings, outreach, and community-building events that help families connect and find each other.
Advocacy & Awareness
Contributions will fund advocacy campaigns, medical community education, and the outreach needed to ensure no family goes undiagnosed.
Planned & Legacy Giving
Leave a lasting impact. Reach out to learn about including the Foundation in your estate plan when our tax-exempt status is confirmed.
Get Involved Your Way
Fundraise For Us
Run a race, host a dinner, celebrate a birthday and turn any moment into a fundraiser. We'll give you everything you need to get started.
Start a FundraiserVolunteer With Us
We need help with events, social media, family outreach, and more. Share your skills and time to help us grow our mission.
VolunteerSETD5 Syndrome Foundation is a nonprofit organization with a 501(c)(3) application pending with the IRS. EIN: 41-5356866. Donations will be tax-deductible once our exempt status is confirmed.
How We Got Here
When our children were diagnosed with SETD5 Syndrome, we received a name but little else. There was no foundation, no patient registry, and no central hub for scientific research for families. Research was scattered, slow, and underfunded.
A group of parents from the United States, Europe, and Australia came together with a single conviction: that a rare disease this newly understood could move from mystery to treatment faster than anyone thought possible, if families organized, raised money, and partnered directly with science.
We hire no executives. We keep our overhead low. We put every dollar toward research and families. And we built the SETD5 Syndrome Foundation. We are just getting started.
"We could not wait for someone else to build what our children needed. So we built it ourselves."
What We Stand For
Our Mission
We are a family-led nonprofit building toward a future where SETD5 Syndrome is understood, treated, and no longer isolating, through research, advocacy, and a global community of support.
Our Vision
A world where every person with SETD5 Syndrome has access to effective treatments, early diagnosis, and a thriving community of support.
Science First
We are committed to funding rigorous, peer-reviewed research — guided by scientific expertise and the needs of families.
Family-Led
Every decision is made with the lived experience of families at the center.
Global & Inclusive
SETD5 Syndrome affects families everywhere. Our community has no borders.
Board of Directors
Parents, caregivers, and allies who volunteer their time and skills to this mission.
Laura Biazon
Doctorally prepared nurse practitioner and LEND fellow focused on early diagnosis, precision medicine, and connecting newly diagnosed families to care.
Samantha Cotter
Registered nurse committed to building awareness, practical resources, and community support for families affected by SETD5 Syndrome.
Amy Kreller-Kochis
Licensed Professional Counselor working to raise awareness of SETD5 Syndrome and build practical resources for individuals and caregivers.
Jesiree Mendez
Mother of two, including a daughter with SETD5 Syndrome. She works to educate and support families from diagnosis onward.
Taryn Mildenhall
Paramedic bringing both clinical expertise and international perspective to advancing research and gene-targeted therapies for SETD5 Syndrome.
Advisory Boards
We are in the process of assembling advisory boards to guide the scientific and medical direction of the Foundation. Members will be nominated by the board and selected based on their credentials, expertise, and independence.
Scientific Advisory Board
We are assembling a Scientific Advisory Board of researchers in SETD5 Syndrome, neurodevelopmental genetics, and rare disease. If this is your field, we would welcome a conversation.
Medical Advisory Board
We are building a Medical Advisory Board of physicians, geneticists, neurologists, and other clinicians who care for children with rare neurodevelopmental conditions.
We Would Love to Hear From You
Families, researchers, donors, press. We respond to every message.
Follow Us
We Would Love to Hear From You
Follow Us
The resources listed below are provided for informational purposes only. The Foundation does not formally endorse any external organization, website, or community. Families are encouraged to evaluate resources independently.
The SETD5 Syndrome Companion
An independently created and maintained website built by a parent of a child with SETD5 Syndrome. Includes genetic report guides, school supports, and plain-language explainers to help families understand the diagnosis and navigate daily life. Also home to SETD5 Syndrome and You, a short illustrated story written for kids explaining SETD5 Syndrome in simple, kind language. Read it together or let them flip through on their own.
This site is independently created and maintained and is not owned or controlled by the Foundation.
Visit setd5syndrome.com ↗SETD5 Syndrome Facebook Group
A private Facebook group for families, caregivers, and individuals affected by SETD5 Syndrome. This is an independent community space not affiliated with the Foundation.
Visit the Group ↗Simons Searchlight
A research program connecting families with published research, patient registries, and clinical databases focused on rare genetic conditions including SETD5 Syndrome.
Visit simonssearchlight.org ↗Not Sure Where to Start?
If you are newly diagnosed or feeling overwhelmed, reach out directly. We will do our best to point you toward resources and connect you with others who understand.
Contact the FoundationA First Point of Contact for Families
When a family receives a SETD5 Syndrome diagnosis, they often have no roadmap. Our goal is to be that first point of contact: helping families find what resources exist, connecting them with others who truly understand, and making sure they feel welcomed into a community that has been waiting for them.
We are not building a new resource library from scratch. We are helping families find the high-quality resources that already exist, and filling the gaps where they don't.
Start Here
If you have just received a SETD5 Syndrome diagnosis, for your child or yourself, the most important thing to know is that there is a community of families who have been exactly where you are.
As we build the Foundation, we are here to point you toward trusted resources and connect you with other families who understand. You do not have to figure this out alone.
Reach Out to UsWhat We Can Help With
- → Finding plain-language resources written for families
- → Pointing you toward trusted resources and organizations
- → Connecting with the global SETD5 Syndrome community
- → Finding other families who understand your experience
Virtual Meetups & Events
We are building a series of virtual meetups so families can connect with one another and with the Foundation. These will start with a welcome session for newly diagnosed families, and regional meet-and-greet calls where families can find others near them.
In-person events are a future goal as the Foundation grows. For now, subscribe to stay notified as these programs take shape.
Stay UpdatedReady to Connect?
Reach out directly and we will help you find what you need. No matter where you are starting from.
Contact the FoundationWays to Work Together
We are looking for organizations that share our belief that rare disease families deserve better science, better support, and a stronger voice. Here are the kinds of partnerships we are building toward.
Scientific Collaborators
We are seeking research institutions and principal investigators working in neurodevelopmental genetics, epigenomics, and rare disease therapeutics to co-develop and co-fund studies.
Advocacy & Policy Allies
We are looking to connect with rare disease advocacy organizations that can help amplify our families' voices and navigate the policy, funding, and legislative landscape.
Funding Partners
We welcome corporate sponsors and philanthropic partners who want to align their giving with a high-impact rare disease mission. Your support goes directly toward funding research.
Let's Work Together
The SETD5 Syndrome Foundation partners with organizations that share our belief that no family should face a rare disease alone — and that better science leads to better lives.
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Advance Rare Disease Research Co-fund studies, share datasets, and accelerate discovery for families waiting on answers.
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Reach a Dedicated Community Connect with an engaged network of families, clinicians, and researchers who trust this Foundation.
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Demonstrate Social Impact Align your organization with a mission that makes a measurable difference for children and families.
Ready to Explore a Partnership?
We'd love to learn about your organization and find ways to work together toward shared goals.
Start the Conversation Learn more about our mission →
Make an Impact
When our 501(c)(3) status is confirmed, every gift, from an individual, a company, or a community group, will go directly to SETD5 Syndrome research, family programs, and advocacy.
One-Time Donation
A direct gift of any size makes an immediate difference, funding lab supplies, research fellowships, and family resources.
Donate NowMonthly Giving
Recurring gifts provide the Foundation with stable, predictable funding that lets us plan research grants and programs with confidence.
Give MonthlyCorporate Giving
Partner with us on research sponsorship, matching gift programs, or cause-marketing campaigns that make a visible difference for rare disease families.
Learn MoreFundraise on Our Behalf
Some of our most powerful fundraising comes from families and friends who take the mission into their own communities.
Birthday & Milestone Fundraisers
Turn a birthday, anniversary, or milestone moment into an act of generosity. Ask friends and family to donate to SETD5 Syndrome Foundation in your honor.
Team & Group Fundraising
Organize a run, bake sale, auction, or community event and donate the proceeds. We'll provide resources, materials, and support to help make your event a success.
Tribute & Memorial Giving
Honor someone you love by making a gift in their name, or invite others to give in lieu of flowers or gifts. A meaningful way to celebrate a life or mark a loss.
Ready to Give?
Every contribution, no matter the size, moves the needle for families living with SETD5 Syndrome.
Donate NowVolunteer Opportunities
We welcome volunteers from all backgrounds: parents, caregivers, medical professionals, researchers, students, and advocates. Your skills and time make a direct difference. Fill out the form below to express your interest. We'll be in touch if there's a match for a need we currently have.
Administrative Support
Help keep the Foundation running smoothly, from organizing documents and coordinating schedules to supporting board operations and day-to-day tasks.
Events & Fundraising
Help plan, promote, and run our fundraising events, from virtual awareness campaigns to in-person community gatherings.
Family Support
Help newly diagnosed families navigate the early days. As a peer support volunteer, you offer connection, empathy, and lived experience to families who need it most.
Social Media & Communications
Writers, designers, and social media volunteers help us tell our story, reach more families, and communicate the science in plain language.
Research & Advocacy
Support our efforts to engage the scientific community by helping with patient registry outreach, research survey distribution, and data collection coordination.
Other
Have a skill or passion that doesn't fit neatly into a category? Tell us about yourself. There's likely a place for you here.
Express Your Interest
Fill out the form below and we'll be in touch with opportunities that match your skills and availability.
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