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Conditions We Support

We go deep, not wide.

Every condition we support gets dedicated infrastructure and community-informed features. We'd rather serve a handful of conditions brilliantly than thousands generically.

Don't see your condition? Request it

Launch conditions

These are the conditions we're building with first, in close partnership with their communities. More conditions will follow based on community need and partnership opportunities.

Phelan-McDermid Syndrome

SHANK3 / 22q13.3

Beta testing
Waitlist open

Phelan-McDermid syndrome happens when a child is missing a working copy of the SHANK3 gene at 22q13.3. That can come from a terminal or interstitial deletion, a point variant in SHANK3 itself, a ring chromosome 22, or an unbalanced translocation that disrupts the gene. It mainly affects brain development, so most children have intellectual disability, low muscle tone, and absent or very limited speech, and many also live with seizures, sleep problems, reflux, and kidney or urinary differences. No two children are alike here. Presentation varies widely from child to child, even between children who have the same size deletion.

Commonly tracked

SeizuresSleep disturbancesSkill regressionReflux and constipationLimited or absent speechLow muscle tone
Sage tracks the patterns that matter in PMS, seizures, sleep, and skill regression, and remembers them for your child across months and years
Clinical trial matching tied to active SHANK3 research, checked against your child's real eligibility
Curated literature, registry updates, and specialist notes, rewritten in plain language
One shared timeline your neurologist, GI, nephrologist, and therapists can all read
Building with the Phelan-McDermid Syndrome Foundation
Est. 2.5 to 10 per million births, often underdiagnosed

Dravet Syndrome

SCN1A variants

In development
Waitlist open

A severe, treatment-resistant epilepsy that begins in the first year of life, most often driven by SCN1A variants. Seizures are frequently triggered by fever and temperature change, alongside developmental and movement challenges.

Commonly tracked

Prolonged seizuresFever-sensitive seizuresDevelopmental delayMovement and balance issuesSpeech delay
Seizure logging with triggers, duration, and rescue-med tracking
Medication efficacy trends across time and providers
FDA trial matching and participation coordination
Community insights on what treatment approaches families try
Building with the Dravet Syndrome Foundation
Est. 1 in 15,700 births

Rett Syndrome

MECP2 mutations

In development
Waitlist open

A neurodevelopmental disorder caused by MECP2 mutations that primarily affects girls. After early typical development, children lose purposeful hand use and spoken language, and develop characteristic hand movements.

Commonly tracked

Loss of hand useLoss of speechRepetitive hand movementsGait and balance problemsBreathing irregularities
Communication strategy tracking with AAC integration
Motor skills and hand-use progression monitoring
Gene therapy trial eligibility matching
One record that follows your daughter across every specialist
Building with the International Rett Syndrome Foundation
Est. 1 in 10,000 girls

Conditions we're building toward next

After our launch conditions, these are the rare conditions on our roadmap. Each one has a patient foundation we can partner with. Search by condition, gene, or a symptom to find yours.

51 conditions on our roadmap

Large national foundation
Established community
Emerging or small group

Spinal Muscular Atrophy

Large
SMN1

Loss of the SMN1 gene weakens the motor neurons that control movement, so muscles get weaker over time.

Commonly tracked

Muscle weaknessLow muscle toneBreathing difficultyFeeding problemsMotor delay
Cure SMA

Duchenne Muscular Dystrophy

Large
DMD

A change in the DMD gene means muscles cannot make dystrophin, a protein they need, so muscle weakens over time.

Commonly tracked

Progressive muscle weaknessTrouble walking or climbingEnlarged calvesFatigueHeart involvement
Parent Project Muscular Dystrophy

Cystic Fibrosis

Large
CFTR

CFTR changes make mucus thick and sticky, mainly affecting the lungs and digestion.

Commonly tracked

Persistent coughLung infectionsTrouble breathingPoor weight gainDigestive problems
Cystic Fibrosis Foundation

Sickle Cell Disease

Large
HBB

A change in the HBB gene makes red blood cells stiff and sickle shaped, which can block blood flow.

Commonly tracked

Pain episodesAnemiaFatigueSwelling in hands and feetFrequent infections
Sickle Cell Disease Association of America

Huntington's Disease

Large
HTT

An expansion in the HTT gene gradually affects movement, thinking, and mood, usually in adulthood.

Commonly tracked

Involuntary movementsBalance problemsMood changesMemory and thinking changesDifficulty speaking
Huntington's Disease Society of America

Amyotrophic Lateral Sclerosis

Large
C9orf72 / SOD1

Motor neurons that control voluntary muscles break down, so movement, speech, and breathing weaken over time.

Commonly tracked

Muscle weaknessMuscle twitchingSlurred speechTrouble swallowingBreathing difficulty
The ALS Association

Hemophilia

Large
F8 / F9

A missing clotting factor means blood does not clot normally, so bleeding lasts longer.

Commonly tracked

Easy bruisingProlonged bleedingJoint bleedsJoint pain and swellingNosebleeds
National Bleeding Disorders Foundation

Fragile X Syndrome

Established
FMR1

Silencing of the FMR1 gene affects brain development. It is the most common inherited cause of intellectual disability.

Commonly tracked

Developmental delayLearning difficultyAnxietyAutism traitsSensory sensitivity
National Fragile X Foundation

Angelman Syndrome

Established
UBE3A

Loss of UBE3A function in the brain affects development, movement, and speech.

Commonly tracked

Developmental delayLittle or no speechSeizuresBalance and gait problemsSleep difficulty
Foundation for Angelman Syndrome Therapeutics

Tuberous Sclerosis Complex

Established
TSC1 / TSC2

Changes in TSC1 or TSC2 lead to benign growths in the brain and other organs.

Commonly tracked

SeizuresSkin changesDevelopmental delayBehavior challengesKidney involvement
TSC Alliance

Prader-Willi Syndrome

Established
15q11-q13

Missing gene activity on chromosome 15 affects appetite, growth, muscle tone, and behavior.

Commonly tracked

Low muscle toneExcessive appetiteFeeding issues in infancyDevelopmental delayBehavior challenges
Prader-Willi Syndrome Association USA

Neurofibromatosis Type 1

Established
NF1

NF1 changes cause tumors to grow along nerves, along with skin and learning differences.

Commonly tracked

Cafe-au-lait skin spotsNerve tumorsLearning difficultyBone differencesVision changes
Children's Tumor Foundation

Marfan Syndrome

Established
FBN1

FBN1 changes affect connective tissue, including the heart, blood vessels, eyes, and skeleton.

Commonly tracked

Tall, slender buildLong limbs and fingersAortic enlargementEye lens problemsFlexible joints
The Marfan Foundation

Ehlers-Danlos Syndrome

Established
COL5A1

Differences in connective tissue affect the joints, skin, and blood vessels.

Commonly tracked

Joint hypermobilityJoint dislocationsChronic painFragile or stretchy skinEasy bruising
The Ehlers-Danlos Society

Friedreich's Ataxia

Established
FXN

Reduced frataxin protein affects the nervous system and heart, causing progressive loss of coordination.

Commonly tracked

Balance and coordination lossMuscle weaknessSlurred speechFatigueHeart involvement
Friedreich's Ataxia Research Alliance

Myotonic Dystrophy

Established
DMPK

A repeat expansion affects muscles and other systems, with muscles slow to relax after use.

Commonly tracked

Muscle weaknessMuscle stiffnessFatigueCataractsHeart rhythm issues
Myotonic Dystrophy Foundation

Charcot-Marie-Tooth

Established
PMP22

Inherited nerve changes affect the peripheral nerves that control the feet, legs, and hands.

Commonly tracked

Foot and leg weaknessNumbnessHigh archesBalance problemsHand weakness
Charcot-Marie-Tooth Association

Osteogenesis Imperfecta

Established
COL1A1 / COL1A2

Collagen differences make bones fragile and prone to fracture.

Commonly tracked

Frequent fracturesBone painLow muscle toneLoose jointsFatigue
Osteogenesis Imperfecta Foundation

Epidermolysis Bullosa

Established
COL7A1

Fragile skin blisters and tears easily from minor friction.

Commonly tracked

Skin blisteringFragile skinPainful woundsFeeding difficultyInfection risk
debra of America

Alpha-1 Antitrypsin Deficiency

Established
SERPINA1

A protein deficiency can affect the lungs and liver.

Commonly tracked

Shortness of breathWheezingFrequent lung infectionsFatigueLiver problems
Alpha-1 Foundation

Gaucher Disease

Established
GBA

An enzyme shortage lets fatty material build up in organs like the spleen and liver.

Commonly tracked

Enlarged spleen or liverAnemiaFatigueEasy bruisingBone pain
National Gaucher Foundation

Pulmonary Hypertension

Established
BMPR2

High blood pressure in the lung arteries makes the heart work harder.

Commonly tracked

Shortness of breathFatigueChest painDizzinessSwelling in the legs
Pulmonary Hypertension Association

Phenylketonuria

Established
PAH

The body cannot break down phenylalanine, which can build up and affect the brain without dietary management.

Commonly tracked

Newborn screenedRequires a special dietDevelopmental delay if untreatedBehavior changes if untreatedEczema
National PKU Alliance

22q11.2 Deletion Syndrome

Established
22q11.2

A small deletion on chromosome 22 can affect the heart, palate, immune system, and development.

Commonly tracked

Heart differencesPalate problemsImmune issuesDevelopmental delayFeeding difficulty
International 22q11.2 Foundation

Williams Syndrome

Established
7q11.23

A deletion on chromosome 7 affects the heart and development, often with a very social personality.

Commonly tracked

Heart and vessel narrowingDevelopmental delayFeeding difficultyVery social personalitySound sensitivity
Williams Syndrome Association

Achondroplasia

Established
FGFR3

The most common form of short-limbed dwarfism, from an FGFR3 change affecting bone growth.

Commonly tracked

Short statureShorter limbsLarger head sizeSpinal curvatureEar infections
Little People of America

Scleroderma

Established
Multifactorial

An autoimmune condition that hardens and tightens the skin and can affect internal organs.

Commonly tracked

Skin hardeningRaynaud color changesJoint painFatigueDigestive issues
Scleroderma Foundation

Myasthenia Gravis

Established
Autoimmune

An autoimmune condition where nerve-to-muscle signals are disrupted, causing weakness that worsens with activity.

Commonly tracked

Muscle weaknessDrooping eyelidsDouble visionTrouble swallowingFatigue with activity
Myasthenia Gravis Foundation of America

Usher Syndrome

Established
MYO7A

A genetic condition affecting both hearing and vision, and sometimes balance.

Commonly tracked

Hearing lossVision loss over timeNight blindnessBalance problemsNarrowing vision
Foundation Fighting Blindness

CDKL5 Deficiency Disorder

Emerging
CDKL5

CDKL5 changes cause early, hard-to-control seizures and developmental differences.

Commonly tracked

Early-onset seizuresDevelopmental delayLow muscle toneVision differencesLimited speech
Loulou Foundation

SYNGAP1-Related Disorder

Emerging
SYNGAP1

SYNGAP1 changes affect brain synapses, leading to developmental delay, epilepsy, and autism traits.

Commonly tracked

Developmental delaySeizuresAutism traitsLow muscle toneSpeech delay
SynGAP Research Fund

Glut1 Deficiency Syndrome

Emerging
SLC2A1

The brain cannot get enough glucose for energy, which can cause seizures and movement problems.

Commonly tracked

SeizuresMovement problemsDevelopmental delayOften helped by ketogenic dietCoordination issues
Glut1 Deficiency Foundation

Cornelia de Lange Syndrome

Emerging
NIPBL

A developmental condition affecting growth, limbs, and learning.

Commonly tracked

Growth delayDevelopmental delayLimb differencesFeeding difficultyBehavior challenges
CdLS Foundation

CHARGE Syndrome

Emerging
CHD7

A pattern of features that can affect the eyes, heart, hearing, and growth.

Commonly tracked

Eye colobomaHeart differencesHearing lossBreathing or swallowing issuesGrowth delay
CHARGE Syndrome Foundation

Kabuki Syndrome

Emerging
KMT2D

A developmental condition with distinctive features, affecting growth, heart, and immunity.

Commonly tracked

Developmental delayFeeding difficultyHeart differencesFrequent infectionsLow muscle tone
All Things Kabuki

Smith-Magenis Syndrome

Emerging
RAI1

A developmental condition often marked by disrupted sleep and behavior challenges.

Commonly tracked

Sleep disturbanceDevelopmental delayBehavior challengesSelf-injurySpeech delay
PRISMS

Cri du Chat Syndrome

Emerging
5p deletion

A deletion on chromosome 5 affecting development, often with a high-pitched cry in infancy.

Commonly tracked

High-pitched cryDevelopmental delayLow muscle toneFeeding difficultySpeech delay
5p- Society

Wolf-Hirschhorn Syndrome

Emerging
4p deletion

A deletion on chromosome 4 affecting growth, development, and often seizures.

Commonly tracked

SeizuresGrowth delayDevelopmental delayLow muscle toneFeeding difficulty
4p- Support Group

Sturge-Weber Syndrome

Emerging
GNAQ

A condition with a port-wine birthmark that can also affect the brain and eyes.

Commonly tracked

Port-wine birthmarkSeizuresGlaucomaDevelopmental delayHeadaches
The Sturge-Weber Foundation

Aicardi Syndrome

Emerging
Unknown

A rare condition affecting brain structure, usually in girls, with seizures early in life.

Commonly tracked

Infantile spasmsSeizuresVision differencesDevelopmental delayLow muscle tone
Aicardi Syndrome Foundation

Batten Disease

Emerging
CLN genes

A group of inherited conditions affecting the nervous system, with progressive changes over time.

Commonly tracked

Vision lossSeizuresCognitive declineMovement problemsLoss of speech
Batten Disease Support & Research Association

Niemann-Pick Disease

Emerging
NPC1 / SMPD1

A lysosomal condition where fatty substances build up in cells, affecting organs and the nervous system.

Commonly tracked

Enlarged liver or spleenMovement problemsDevelopmental changesDifficulty swallowingCoordination loss
National Niemann-Pick Disease Foundation

Fabry Disease

Emerging
GLA

An enzyme shortage lets a fatty substance build up, affecting the skin, kidneys, and heart.

Commonly tracked

Pain in hands and feetSkin spotsReduced sweatingKidney involvementHeart involvement
Fabry Support & Information Group

Pompe Disease

Emerging
GAA

An enzyme shortage lets glycogen build up in muscles, affecting movement and breathing.

Commonly tracked

Muscle weaknessBreathing difficultyLow muscle toneFeeding difficultyHeart involvement
United Pompe Foundation

Wilson Disease

Emerging
ATP7B

Copper builds up in the body, mainly affecting the liver and brain.

Commonly tracked

Liver problemsTremorMovement changesMood or behavior changesFatigue
Wilson Disease Association

Alagille Syndrome

Emerging
JAG1

A condition affecting the liver's bile ducts, along with the heart and other systems.

Commonly tracked

JaundiceIntense itchingPoor growthHeart differencesFeeding difficulty
Alagille Syndrome Alliance

Ataxia-Telangiectasia

Emerging
ATM

A condition affecting coordination and the immune system, with progressive loss of balance.

Commonly tracked

Balance and coordination lossSlurred speechFrequent infectionsFatigueMovement changes
A-T Children's Project

Von Hippel-Lindau

Emerging
VHL

An inherited condition that raises the risk of tumors and cysts in several organs.

Commonly tracked

Eye or brain tumorsKidney cysts or tumorsHeadachesBalance problemsVision changes
VHL Alliance

Primary Ciliary Dyskinesia

Emerging
DNAI1

Tiny hair-like cilia do not move mucus properly, leading to chronic lung and sinus problems.

Commonly tracked

Chronic coughFrequent lung infectionsSinus congestionEar infectionsBreathing difficulty
PCD Foundation

Maple Syrup Urine Disease

Emerging
BCKDH

The body cannot break down certain amino acids, which requires careful dietary management from birth.

Commonly tracked

Newborn screenedRequires a special dietFeeding difficultyLethargy if untreatedDevelopmental risk if untreated
MSUD Family Support Group

Galactosemia

Emerging
GALT

The body cannot process galactose, a sugar in milk, which requires a galactose-free diet.

Commonly tracked

Newborn screenedRequires a special dietFeeding difficultyLiver involvement if untreatedDevelopmental risk if untreated
Galactosemia Foundation

This roadmap reflects conditions with active patient communities, not a fixed launch order. Foundations, don't see your condition, or want to move it up? Partner with us →

Why we start here

We chose our launch conditions based on three criteria:

Active research pipeline

Conditions with gene therapy trials in progress, where real-time patient data can accelerate treatment development.

Engaged community

Communities we can learn from, so we build what families actually need.

Complex care coordination

Conditions where families manage multiple specialists, medications, and therapies. CareGene adds the most value here.

How we approach new conditions

Adding a condition isn't flipping a switch. We invest deeply in understanding nuances, research landscape, and community needs.

Research infrastructure

For each condition, we go deep on the literature, treatment protocols, and condition-specific terminology so Sage can search and retrieve accurately.

Family-centered tools

Custom symptom tracking aligned with how the condition actually presents, plus automatic clinical-trial eligibility based on genetic markers and medical history.

Community-informed design

We learn from patient communities and advocacy groups so the support we build reflects how families actually live with the condition, not how textbooks describe it.

Request a condition

We prioritize based on community need, data availability, and partnership opportunities.

Foundation or advocacy organization? See our pilot partnership program →

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