2026 Take Heart Conference Registration

Overview

Ollie Hinkle Heart Foundation (OHHF) invites you to Take Heart - a free, virtual conference for heart families and healthcare professionals. At Take Heart, heart families and leading heart experts come together to learn from each other. You’ll hear helpful information, real stories, and new ideas to help those with heart conditions live their best lives. Whether you are a heart patient, parent, caregiver, family member, or healthcare professional, you belong here. Come learn, connect, ask questions, and find hope for the heart journey ahead.

Tell us about you

We want everyone at Take Heart to feel welcome and supported. A few questions about you will help us learn who we are reaching and how we can better support our heart community.

Your answers are private.

Are you a heart patient or family member, healthcare professional, or both?

Heart patient or family memberHealthcare professionalBoth

Are you the person with a heart condition?

YesNo

Who are you here to support?

My child	My spouse/partner
My sibling	My grandchild
Another family member or loved one

If other, please specify.

Tell us about your work

Where do you work?

If other, please specify.

What is your healthcare profession or role?

If other, please specify.

First Name

Last Name

Preferred Name

Date of Birth

Gender

If other, please specify.

Pronouns

she/her

he/him

they/them

prefer not to say

other

If other, please specify.

Race/Ethnicity

Select all that apply:

American Indian or Alaskan Native	Asian or Asian American
Black or African American	Hispanic or Latino/a/x
Native Hawaiian or Other Pacific Islander	Southwest Asian or North African
White or Caucasian	Prefer not to answer
Other

If other, please specify.

How many people live in your household, including you?

If other, please specify.

Contact Information

Phone Number

What is your country of residence?

United StatesOther

If other, please specify.

State

Activity Kit

Heart Family Activity Kit

Create, connect, and have fun together!

Heart families can receive a free Take Heart Activity Kit in the mail. Your kit includes your family’s LOVE T-shirts, a tie-dye activity, and other fun surprises to enjoy together during Take Heart.

Want a kit? Select Yes below. Then tell us how many T-shirts your family needs and the size for each person.

Get Your Kit Before Take Heart: Register by Friday, September 25 to help make sure your kit and T-shirts arrive before the conference.

Registering Later? You can still join us! We’ll keep sending Activity Kits while supplies last, but we can’t promise that every T-shirt size will be available or that your kit will arrive before Take Heart.

Healthcare Professional Conference Kit

Get ready for Take Heart! Healthcare professionals are invited to receive a complimentary conference gift, including our official LOVE T-shirt and a Take Heart goodie bag.

To receive your conference gift, select Yes below and provide your preferred T-shirt size and mailing information.

Get Your Gift Before Take Heart: Register by Friday, September 25 to help make sure your conference gift arrives before the conference.

Registering Later? You can still join us! We’ll keep sending conference gifts while supplies last, but we can’t promise that every T-shirt size will be available or that your gift will arrive before Take Heart.

Would you like to receive a free Take Heart gift in the mail?

YesNo

Activity Kit shirt sizing & shipping

Heart Family Shirt Selection

Please enter the number of shirts needed for each size. Enter 0 if none are needed.

Youth XS

Youth S

Youth M

Adult XS

Adult S

Adult M

Adult L

Adult XL

Adult 2XL

Total Shirts

Clinician Shirt Selection

Which size shirt are you requesting?

Adult XSAdult SAdult MAdult LAdult XLAdult 2XL

Mailing Address

Start typing in your address below--spell out street names ("Street" instead of "St" or "Avenue" instead of "Ave").
Click your full address when it pops up in the search. Confirm that it's correct and add any apartment or unit info in the "Street 2" box.
If your address does not come up in search, select each box individually to manually type it in.

Street

Street 2

City

State/Providence Code

Postal Code

Country

Tell Us More

Primary Hospital for Care

If other, please specify.

How far away do you live from the hospital?

Are you interested in sharing your story?

YesNo

If yes, please submit here

Would you like to learn more about the Adult Congenital Heart Association (ACHA) Peer Mentorship Program? The ACHA offers a peer support initiative that connects people living with congenital heart conditions to trained peer mentors for one-on-one support, encouragement, and shared experiences. Learn more here: Heart-to-Heart Peer Mentoring Program

YesNo

Wonderful! A Care Manager will make a formal referral for you so you can be connected to a peer mentor.

Adult Diagnoses

Please choose the category or categories that fit you. You can pick more than one.

After you choose, you can opt in to see more specific conditions. If you're not sure about a category, you can check the box to see the choices on the next page then uncheck on this page if it doesn't fit.

Your information is private and safe.

Please select your AGE at DIAGNOSIS:

PrenatallyInfant (birth to age 1)Pre-schooler (2-5)School age (6-12)Teenager (13-17)Young addult (18-39)Adult (40+)

Health Conditions

Heart Condition (heart problems now or in the past)Genetic (a condition you're born with or that runs in the family)Mental Health (feelings like worry, sadness, or stress)Neurodevelopmental & Neurodivergent (learning, attention, or behavior differences--like autism or ADHD)

Would you like to tell us more?

I want to provide further detail about my health conditions.I do not want to provide further detail about my health conditions.

Tell Us About the patient

Patient's First Name

Patient's Last Name

Patient's Preferred Name

Patient's Date of Birth

Is your child deceased?

YesNo

Do you mind sharing the date when they passed away?

If you would like, please provide a photo of your Heart Warrior to include in our dedication collage during the conference.

Please select their CURRENT age group:

Infant (birth to 23 months)	Preschooler (2-5)
School age (6-12)	Teen (13-17)
Young adult (18-39)	Adult (40+)

Child's Gender

If other, please specify.

Child's Pronouns

she/her

he/him

they/them

other

prefer not to say

If other, please specify.

Race/Ethnicity

Select all that apply to your child:

American Indian or Alaskan Native	Asian or Asian American
Black or African American	Hispanic or Latino/a/x
Middle Eastern or North African	Native Hawaiian or Other Pacific Islander
White or Caucasian	Prefer not to answer
Other

If other, please specify.

Primary Hospital for Care

If other, please specify.

How far away do you live from the hospital?

Are you interested in sharing your family's story?

YesNo

If yes, please submit here

Please choose the category or categories that fit your family. You can pick more than one. After you choose, we'll show you more specific diagnoses. If you're not sure about a category, you can check the box it to see the choices on the next page then uncheck it if it doesn't fit. Your answers help us connect you with the right care and support. Your information is private and safe.

Please select their AGE at DIAGNOSIS:

Prenatally	Infant (1 and under)
Preschooler (2-5)	School age (6-12)
Teen (13-17)	Young adult (18-39)
Adult (40+)

Health Conditions

Heart Condition (heart problems now or in the past)NICU-related (a health problem at birth when a baby is born too early or too small)Genetic (a condition you're born with or that runs in the family)Mental Health (feelings like worry, sadness, or stress)Neurodevelopmental & Neurodivergent (learning, attention, or behavior differences--like autism or ADHD)

Would you like to tell us more?

I want to provide further detail about their health conditions.I do not want to provide further detail about their health conditions.

Heart Conditions

Acquired Heart Conditions

Infective EndocarditisKawasaki DiseaseMyocarditisRheumatic Heart Disease

Arrhythmias

Complete Heart BlockLong QT SyndromeSupraventricular Tachycardia (SVT)Ventricular TachycardiaWolf-Parkinson-White Syndrome (WPW)

Cardiomyopathy

Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC)Dilated CardiomyopathyHypertrophic CardiomyopathyLeft Ventricular Non-Compaction Cardiomyopathy (LVNC)Restrictive Cardiomyopathy

Pediatric Pulmonary Hypertension

Idiopathic Pulmonary Arterial Hypertension (IPAH)Pulmonary Hypertension secondary to Congenital Heart DiseasePulmonary Hypertension secondary to Bronchopulmonary Dysplasia (BPD)

Single Ventricle Heart Conditions

Complex Double Outlet Right Ventricle (DORV) with severe imbalance	Double Inlet Left Ventricle (DILV)
Double Outlet Right Ventricle (DORV) with Hypoplastic Left Ventricle	Heterotaxy Syndrome with Univentricular Physiology
Hypoplastic Left Heart Syndrome (HLHS)	Hypoplastic Right Heart Syndrome (HRHS)
Mitral Atresia	Pulmonary Atresia
Pulmonary Atresia with Intact Ventricular Septum (PA/IVS)	Tricuspid Atresia
Unbalanced Atrioventricular (AV) Canal	Univentricular Heart (generic diagnosis)

Transplant

Listed for Heart TransplantPost-Transplant ComplicationsStatus-post Heart Transplant

Two Ventricle Heart Conditions

Anomalous Pulmonary Venous Return (TAPVR, PAPVR) – veins connect abnormally but both ventricles intact	Aortic Regurgitation (rarely congenital, usually bicuspid valve related)
Aortic Stenosis (valvar, subvalvar, supravalvar)	Aortopulmonary Window
Atrial Septal Defect (ASD)	Atrioventricular Septal Defect (AVSD)
Bicuspid Aortic Valve (BAV)	Cleft Mitral Valve (isolated, not part of AVSD)
Coarctation of the Aorta	Congenital Aortic Stenosis
Congenital Mitral Stenosis / Atresia (with preserved LV size)	Cor Triatriatum (sinistrum or dextrum) – extra atrial chamber
Coronary Artery Anomalies (congenital origin issues, e.g., anomalous left coronary from pulmonary artery [ALCAPA])	Double Outlet Right Ventricle (DORV, balanced forms) – both great arteries come off the RV, but both ventricles are usable
Ebstein’s Anomaly of the Tricuspid Valve (if RV is functional enough for biventricular repair)	Interrupted Aortic Arch
Pulmonary Regurgitation (usually post-repair or rare congenital)	Pulmonary Stenosis (valvar, subvalvar, supravalvar)
Tetralogy of Fallot (TOF)	Transposition of the Great Arteries (D-TGA-complete transposition, usually requires arterial switch operation)
Transposition of the Great Arteries (L-TGA-congenitally corrected transposition, AV and VA discordance)	Truncus Arteriosus (common arterial trunk, but both ventricles present)
Ventricular Septal Defect (VSD)

Vascular Rings or Slings or Tracheal Rings

Complete Tracheal RingsDouble Aortic ArchPulmonary SlingRight Aortic Arch with Aberrant Left Subclavian Artery

Other Heart Conditions

Coronary Artery AnomaliesEbstein's AnomalySinus of Valsalva AneurysmOther

If other, please specify.

NICU-Related Conditions

Bronchopulmonary Dysplasia (BPD)Chronic Lung Disease with cardiac strainComplex abdominal wall defectsCongenital Diaphragmatic Hernia (CDH)Esophageal atresiaGastroschisisHypoxic-Ischemic Encephalopathy (HIE)Intestinal Malrotation with volvulusIntraventricular Hemorrhage (Grades III-IV)Laryngeal/airway anomalies with cardiac compromiseNecrotizing Enterocolitis (NEC) with cardiac monitoringOmphalocelePersistent Pulmonary Hypertension (PPHN)Prematurity <32 weeks with cardiac/respiratory compromiseProlonged NICU stay (>4 weeks)Pulmonary Vein StenosisSeizure disorders from birth trauma or cardiac eventsStroke (perinatal) with cardiac involvementTracheoesophageal Fistula (TEF)VACTERL association or CHARGE syndromeOther

If other, please specify.

Genetic Conditions

1p36 deletion syndrome	22q11.2 deletion (DiGeorge/VCFS)
8p23.1 deletion (GATA4 region)	Alagille syndrome
Bardet–Biedl syndrome	Barth syndrome
Brugada syndrome	Cardio-facio-cutaneous syndrome
Cat Eye syndrome (22q11 duplication)	CHARGE syndrome
Costello syndrome	Cri du Chat syndrome (5p deletion)
Danon disease	Down syndrome (Trisomy 21)
Edwards syndrome (Trisomy 18)	Ellis–van Creveld syndrome
Fabry disease	Friedreich ataxia
GATA6-related congenital heart disease	Glycogen storage disease type III
Goldenhar syndrome	Holt–Oram syndrome
Heterotaxy syndromes	Jervell & Lange-Nielsen syndrome
Jacobsen syndrome (11q terminal deletion)	Kabuki syndrome
Loeys–Dietz syndrome	Long QT syndrome
Marfan syndrome (FBN1)	Muscular dystrophy (various types)
NKX2-5-related congenital heart disease	Noonan syndrome
Noonan with Multiple Lentigines (LEOPARD)	Patau syndrome (Trisomy 13)
Pompe disease	PRKAG2 cardiac glycogenosis
Primary ciliary dyskinesia	Smith–Lemli–Opitz syndrome
Smith–Magenis syndrome (17p11.2 del)	Timothy syndrome
Townes–Brocks syndrome	Trisomy (unspecified)
Tuberous sclerosis complex	Turner-related aortopathy
Turner syndrome (45,X)	VACTERL association
Vascular Ehlers–Danlos	Williams–Beuren syndrome (7q11.23 del)
Wolf–Hirschhorn syndrome (4p deletion)	Other

If other, please specify.

Neurodevelopmental & Neurodivergent Conditions

Attention & Thinking

ADHD (Attention-Deficit/Hyperactivity Disorder)Slow processing speedTrouble with focus, organization, or impulse control (even without ADHD diagnosis)Other

Learning & Cognitive

Intellectual disability or global developmental delayLearning disability in math (dyscalculia)Learning disability in reading (dyslexia)Learning disability in writing (dysgraphia)Nonverbal learning disability (trouble understanding visual or spatial information)Other

Motor & Coordination

Developmental coordination disorder (dyspraxia)Fine motor delay (using hands for tasks)Gross motor delay (running, jumping, balance)Other

Social & Communication

Apraxia of speech (difficulty planning speech movements)Autism Spectrum Disorder (ASD)Language delay or language disorder (expressive/receptive)Social communication difficulties (understanding social cues, back-and-forth conversation)Speech sound difficulties (pronunciation)Other

If other for any of the above, please specify.

Mental Health Conditions

Adjustment disorder (Trouble coping with big changes, stress, or medical news)Body image concerns(Worry about scars, medical devices, or physical differences)Depression (Feeling sad, hopeless, or losing interest in activities)Emotional distress after medical procedures or hospital staysFlashbacks, nightmares, or avoiding reminders of careGeneralized anxiety (worry about many things)Health-related anxietyLow-self esteemMedical trauma (Lasting emotional distress from repeated medical procedures or emergencies)Panic attacksPost-Traumatic Stress Disorder (PTSD)Separation anxiety (trouble being away from caregiver)Social anxiety disorder (Fear or discomfort in social situations)Other

If other, please specify.

Calculations

acquired

arrhythmia

cardiomyopathy

hypertension

singleVentricle

transplant

twoVentricle

ringsSlings

otherHeart

nicuRelated

genetic

attention

learning

motor

social

mentalHealth

Diagnoses Category

Referral Source

How did you hear about Take Heart?

If other, please specify.

Do you have any comments or questions for us?

Consent & Privacy Agreement

By completing and submitting this form, I understand and agree to the following:

1. Collection of Information

Ollie Hinkle Heart Foundation (OHHF) is collecting the personal information I provide for the purpose of offering services, resources, and communications related to its mission.

2. Use of Information

My information may be used by OHHF staff to assess needs, connect me with programs, provide updates, and improve services.
De-identified and aggregated data may be used for reporting, evaluation, and advocacy purposes.

3. Sharing of Information

OHHF will not sell or share my personal information with third parties for marketing purposes.
OHHF may share my information with trusted partners or providers only when necessary to deliver requested services or as required by law.

4. Confidentiality & Security

OHHF will take reasonable steps to protect my information and maintain confidentiality.
Despite these safeguards, I understand that no system of transmitting or storing data can be guaranteed 100% secure.

5. Voluntary Consent

Providing my information is voluntary. I may choose not to share certain information, but this may limit the services or resources available to me.
I may request to update or withdraw my information at any time by contacting OHHF at publicrelations@theohhf.org.

6. Digital Media Consent

I understand Ollie Hinkle Heart Foundation may use any photograph, video or other digital media (“Photos”) taken during this event, in any and all of its publications, including print or web-based publications

7. Consent Statement

By submitting this form, I confirm that I have read, understood, and voluntarily consent to the collection, use, and sharing of my information as described above.

Contact Information