Below are the following organizations that offer support to patients and families:
Congenital Heart Defect Coalition – CHD awareness, family support, and research fundraising. Our mission is to unite and support the CHD community, increase public awareness and raise money for lifesaving medical research. From hospital recommendations to a shoulder to lean on, we offer community resources and a chance to build lifelong friendships. Together, we are united to make a change and become the greatest advocates for those affected by CHD. chdcoalition.org
Adult Congenital Heart Association (ACHA) – Advocacy, support, education, and accreditation for adults living with CHD www.achaheart.org
Bright Heart Foundation – Family support, advocacy, and CHD awareness. Grounded in love, with a primary mission of hope, the Bright Heart Foundation advocates for and supports children and their families living with the challenges of Congenital Heart Defect (CHD), while also providing support for the physicians who treat them. Provide the babies with developmental support equipment, and parents with the encouragement tools crucial to keeping their spirits elevated during their months/years of hospital stays. Support the physicians as they provide expert care for this group of very sick children. Support the Pediatric Cardiac Surgery Endowment Fund at Monroe Carell Jr. Children’s Hospital at Vanderbilt in their vital and ongoing research in the fight against CHD brightheartfoundation.org
Sisters by Heart -Is an all-volunteer team of parents and individuals affected by single ventricle heart disease (SVHD). SBH was founded in 2010 when a small group of moms with newly diagnosed children realized the lack of support and resources for SVHD. Our organization began with a core mission of sending care packages to newly diagnosed families, and expanded to sending care packages to children preparing to undergo the Fontan surgery. In addition to our care packages, SBH also facilitates connections in our community through active partnerships with learning healthcare collaboratives, researchers, healthcare providers and other support organizations.Our goal is to foster education, advocate care and lend our voices and experiences so that we can improve outcomes, quality of life and ultimately one day – find a cure for SVHD www.sistersbyheart.org
Hope for Hearts – Advocacy, education, and support for individuals and families impacted by congenital heart disease. Hope for Hearts is dedicated to raising awareness, providing support, and assisting in funding research for children and families affected by congenital heart defects and transplants. Through compassion and advocacy, we strive to ensure that every heart has a chance to thrive, and no one faces cardiac challenges alone. We honor the resilience of those with heart conditions and their families. We are dedicated to educating families about early diagnosis, providing support for the whole family, and fostering lasting hope for healthier hearts. www.hopeforheartssd.org You can also follow them on Facebook!
Project 1 in 100– Awareness initiative highlighting that 1 in every 100 babies in the U.S. is born with a congenital heart defect. Creating awareness and education to help more people learn about CHD. http://www.project1in100.org
Hole in the Heart – Raising awareness of congenital heart defects while advocating for best practices of timely detection and diagnosis. HoleInTheHeartASD.org
Ollie Hinkle Heart Foundation – Funds critical CHD research, raises awareness, and supports families impacted by congenital heart disease in honor of Ollie Hinkle. theohhf.org
Linked by Love– Linked By Love is a supportive community dedicated to families affected by Congenital Heart Disease (CHD). We understand that navigating the journey of CHD can be challenging, and we believe that no one should have to do it alone. We are here to foster connections among heart mamas, provide a safe space to share experiences, offer support, and build lasting friendships. Provide opportunities for families to come together, share their stories, and connect with others who have faced similar challenges. We are committed to creating a warm and welcoming environment where everyone feels valued and heard. Together, we can navigate the ups and downs of CHD, celebrating victories and providing comfort during difficult times. Your story matters, and by sharing it, you can help others feel less alone in their experiences. https://www.bornbraveboutique.com/pages/linkedbylove
Born Brave Boutique-Mission based business that uses profits to fund care packages to CICUs. We also fund Linked by Love, a CHD mama support group, so we are able to keep it free, virtual, and private for all mamas.https://www.bornbraveboutique.com/
CHD Tablet Talk Foundation – Our mission is to keep children with complex congenital heart disease (CHD) engaged and connected while experiencing lengthy stays in the hospital. Foster relationships with pediatric cardiac centers, CHD resources centers, and community organizations to identify children in need. Provide resources, education, support, tablets, connection, and mentorship to hospitals and individuals impacted by congenital heart disease. https://www.chdtablettalk.org/
Transplant Teenz – is a nationwide virtual peer support community for teenagers (7th-12th Grade) who have undergone or are awaiting organ transplants. We understand the unique challenges that come with these experiences and aim to empower teens through virtual support group, interactive resources, and a safe space to share the ups and downs that can come with healing. https://www.transplanttz.org/about
Heartfelt Dreams Foundation -Is dedicated to helping congenital heart defect patients and their families with emotional support, educational programs, and financial assistance primarily in the form of transportation and hotel accommodations for CHD patients in need of surgery at a specialty heart center.https://www.heartfeltdreamsfoundation.org/
&mamatoo – A Dash of Love – That every single mother, NICU or not, is taken care of with the same love, attention, care, and honor that her baby is. That her body is honored for the experience it’s healing from. For NICU moms, that her heart is honored for the newborn experience it’s mourning it may never have. &mamatoo care baskets: because while the baby is being cared for, we want to care for mom, too. Our line of products is naturally made, handmade, women-made, and mother-made. From our home & family to yours. https://www.andmamatoo.com/