Heterotaxy Connection is committed to connecting with other organizations as we seek to improve care and outcomes for our families. We are proud to partner with the following groups:
The vision of the Utah Nonprofit Association is to promote strong and vibrant communities for all of Utah by unifying, strengthening and elevating Utah's nonprofits.
The mission of the RDCRN is to advance medical research on rare diseases by providing support for clinical studies and facilitating collaboration, study enrollment and data sharing.
Supporting the rare disease research enterprise as full partners in the RDCRN is the unique and crucial role of CPAG. It is hoped that the success of this relationship between the physician-investigators and the CPAG volunteers will be a model of how such partnerships can lead to a more open and informed research process.
The Genetic Disorders of Mucociliary Clearance Consortium exists to bring together physicians and patients for the sake of Mucociliary Clearance Diseases research.
The National Center for Advancing Translational Sciences (NCATS) at the National Institutes of Health (NIH) was established to transform the translational science process so that new treatments and cures for disease can be delivered to patients faster.
Global Genes is committed to providing information, resources and connections to all communities affected by rare diseases.
The primary purpose for starting the PCD (Primary Ciliary Dyskinesia) Foundation was to address severe unmet needs in the PCD patient community, including: diagnostic challenges, lack of evidence to support therapies, inadequate demographic information and paucity of data related to the natural history of this disorder. Their programs reflect their efforts to create an infrastructure and processes to address these unmet needs. The mission of the PCD Foundation is to improve the quality of life for those affected by PCD and to develop the means to find a cure.
The Claire the Heart Warrior Foundation was created to honor the Ruf's daughter, Claire, who was born with congenital heart disease (CHD) and heterotaxy. Claire fought courageously and passed away in 2023 at 14 months old. The foundation seeks to help other families facing the challenges of CHD and heterotaxy. Through education, advocacy, and financial support, they strive to make a positive impact on the lives of those affected by these birth defects.
The Miracle Ryker Foundation is a non-profit organization, founded in memory of heterotaxy hero Ryker, that helps families with children faced with excessive hospital stays. Whether it be a piece of medical equipment that is not approved by health insurance, flights to get across the country to the correct hospital or the cost of rent to help get by while juggling hospital stays, the Miracle Ryker Foundation wants to help! They hope to make that unbearable hospital stay with a child a little more bearable.
The Gabriella Miller Kids First Data Resource Center (Kids First DRC) is a new, collaborative, pediatric research effort with the goal of understanding the genetic causes and links between childhood cancer and structural birth defects.