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Advocacy and Fundraising

Through national campaigns, awareness & remembrance events, and community-led fundraisers, Heterotaxy Connection brings families, advocates, and supporters together to drive progress and amplify the impact of our shared mission.

Shop HC

  • Apparel for the whole family

    Ranging from newborn to adult 4X, choose your colors and sizes of the most current awareness designs.

    Check it out!

  • Scrubs and Caps

    Show you care by showing you’re aware! Our awareness designs are also available on stylish scrubs and caps!

    Check it out!

  • Pets and Travel

    Pets are family, too. We’ve got bandanas in three sizes. Also check out the super handy insulated totes and baby items.

    Check it out!
Line drawing of a child in a superhero cape. Text reads: Together we thrive! Your generosity helps us connect families, advance research, and change outcomes for those with Heterotaxy. Because no family should have to face Heterotaxy alone.

A simple monthly contribution can make an ENORMOUS difference!

Join the movement

Invest in Hope

A smiling toddler with light brown skin and dark, curly hair stands between two adults, holding one of their hands with each of his. The adults are only partially visible with the focus being on the little cutie.

Your sponsorship changes what it feels like to face heterotaxy. Because of you, families can find connection instead of isolation, clarity instead of confusion, and hope during some of their hardest moments.

Your support makes it possible to expand programs, share trusted education, and provide lasting support, so that every family knows they are seen, supported, and never alone.

Sponsor Hope

Heterotaxy Awareness

The official Heterotaxy Awareness Day is May 4th, the birthdate of Björn Ivemark, who was among the first to document congenital anomalies (Ivemark Syndrome) similar to what we know today as Heterotaxy. However, spreading awareness and support for the Heterotaxy community happens all year long.

A number of children sit in chairs, facing a storyteller who is off screen and not pictured

SHARE YOUR STORY

Unleash the power of storytelling and draw others toward the reality of life with Heterotaxy.

Submit a story

Spread awareness by wearing Heterotaxy Connection gear, hosting a local awareness day gathering or activity, hold an information booth at a local event, and share on social media.

SPREAD THE WORD LOCALLY

Fundraising spreads awareness with the added benefit of having a direct impact on the Heterotaxy Connection community

HOST A FUNDRAISER

Submit Fundraising Inquiry

Remembrance Day

a large collage of faces with the text "remembering together" stands on a table covered in lit tea lights and one large candle

It is our honor to speak their names and share their stories.

a butterfly is backlit in the sunset light coming through a window

Each year on November 4th we gather as a community to remember the warriors we've lost to Heterotaxy. We invite every family who has lost a loved one to Heterotaxy to fill out this form if you would like us to include them in our next day of remembrance.

Share a Tribute
a scanned copy of a proclamation with the State of Illinois seal across the top and the governor's seal at the bottom. The text isn't really legible but looks fancy

Awareness Day Proclamations

  • A Heterotaxy Awareness Day proclamation is an official statement issued by a state or local government recognizing May 4th as Heterotaxy Awareness Day. It helps raise public awareness, supports families affected by heterotaxy, and encourages communities to learn more about this rare condition.

  • Requesting a proclamation helps bring visibility to Heterotaxy and encourages policymakers and communities to support awareness, education, and research.

  • Any resident of a state (patients, parents, caregivers, or advocates) can submit a proclamation request. You don’t need a formal organization or special credentials.

  • Proclamation requests are typically submitted through the Governor’s, Mayor’s, or local elected official’s website. Most offices have an online proclamation request form. If no form is available, requests can usually be submitted by email or mail to the official’s office. Requests should include the proposed proclamation text, the requested date, the purpose of the proclamation, and contact information. Submission deadlines vary, but requests are often required several weeks in advance.

    Here’s a voicemail / email script you can use if you’re not sure what to say when you contact your state officials:

    “Hello, my name is [Name], and I’m calling to ask about requesting a proclamation. I’m hoping to submit a request for Heterotaxy Awareness Day on May 4th.

    I wanted to ask what the preferred process is for submitting a proclamation request, whether there’s an online form, an email address, or specific information you need.

    Thank you very much for your time and assistance.”

  • No. State and local governments do not charge fees for issuing awareness day proclamations.

  • Processing times vary, but most offices respond within a few weeks. Submitting early increases the chance of approval before May 4th.

  • Awareness Day proclamations aren’t just for US states! Whether you’re in Canada, Australia, or anywhere in between, you can contact your local government to ask that May 4th be designated as Heterotaxy Awareness Day.

  • Here is sample text for a Heterotaxy Awareness Day proclamation. Make sure to change it to personalize it for your state or province, and feel free to add more information about your family’s journey with Heterotaxy.

    PROCLAMATION TEMPLATE — HETEROTAXY AWARENESS DAY

    WHEREAS, Heterotaxy (sometimes called heterotaxy syndrome or heterotaxy spectrum disorders) is a rare congenital condition in which the internal organs, including the heart, lungs, liver, spleen, and intestines, are abnormally arranged within the chest and abdomen due to differences in left-right body patterning; and

    WHEREAS, Heterotaxy can cause complex medical challenges affecting multiple organ systems, often requiring specialized care and coordination among multidisciplinary medical teams; and

    WHEREAS, the causes, symptoms, and severity of heterotaxy vary widely, and the condition may be life-threatening in infancy or persist with lifelong health challenges; and

    WHEREAS, due to its rarity, public awareness of Heterotaxy and its impact on individuals and families remains limited among the general public as well as many health professionals; and

    WHEREAS, continued research, improved clinical understanding, and increased support for affected individuals and families are essential to improving outcomes and enhancing quality of life; and

    WHEREAS, Heterotaxy Awareness Day provides an opportunity for families whose lives have been touched by this condition to celebrate resilience, honor loved ones lost, recognize dedicated health professionals, and share experiences to educate others; and

    NOW, THEREFORE, I, [Name, Title], hereby proclaim May 4th, [YEAR] as HETEROTAXY AWARENESS DAY in [State/City/Town/County], and urge all residents to observe this day with appropriate programs, activities, and increased awareness of Heterotaxy and its impact on families and the medical community.

    IN WITNESS WHEREOF, I have hereunto set my hand and caused the Seal of the [State/City/County] to be affixed this [day] of [month, year].

  • You can share the announcement on social media, with local news, or within support communities to help spread awareness. Make sure to tag us in social posts so we can celebrate with you!