Resources for Hemangioma Patients and Families
At the Hemangioma and Vascular Malformation Center at Cincinnati Children’s, there is a wide variety of resources available to support patients and their families. We encourage families to learn about and use the resources that best fit their needs.
The Patient & Family Wellness Center at Cincinnati Children’s includes specialists from Child Life, Financial Services, Pastoral Care, the School Intervention Program and Social Work. They can provide:
- Emotional, psychosocial and spiritual support
- Assistance with school concerns
- Community outreach and education
- Information about additional resources (financial, insurance, community)
- Assistance with lodging, ground transportation and other concerns. Guest Services at Cincinnati Children’s helps make a stay in Cincinnati more comfortable and convenient.
Other Cincinnati Children’s Services
- Patients at Cincinnati Children's can visit the Family Resource Center for a place to relax and get assistance with many non-clinical amenities.
- Guest Services at Cincinnati Children’s helps make a stay in Cincinnati more comfortable and convenient. They provide assistance with lodging, ground transportation and other concerns.
- The Clinical Concierge team schedules multiple medical appointments for families traveling to Cincinnati Children’s from outside the region.
- Cincinnati Children’s is proud to care for patients from all over the world. Interpreter Services provides free written translation as well as spoken and sign interpreting to enable meaningful communication between patients, families and providers.
Kids Camp
The Cancer and Blood Diseases Institute hosts a week-long summer camp every year at Camp Joy Outdoor Education Center in Clarksville, OH. The staff works closely with the Cincinnati Children’s medical team to create a safe, supportive environment for children, no matter what their abilities. The camp is an opportunity for kids ages 7-16 to develop new skills, form lasting friendships and build their self-esteem, all while having a great time. Patients are encouraged to bring a sibling. See details and request registration packet.
Support and Education
There are a number of organizations that provide extensive support and education to patients and families dealing with vascular anomalies. Several recommended informational websites and support groups include:
- Angioma Alliance is a patient-directed network created by and for those affected by cavernous angiomas and their loved ones, health professionals and researchers.
- AVM Survivors
- CLOVES Syndrome Foundation is a not-for-profit organization focused on improving the lives of CLOVES patients by funding overgrowth syndrome and vascular anomaly research. The foundation is committed to raising public awareness and providing member support through educational literature and resources.
- CLOVES Syndrome Community is a not-for-profit organization that supports, educates, empowers and improves that lives of those affected by CLOVES syndrome.
- Cure HHT is a worldwide not-for-profit organization with the mission to support patients and families affected by hereditary hemorrhagic telangiectasia and to educate medical professionals.
- FACES: The National Craniofacial Association
- Hemangioma Education is an informational resource for parents and physicians from the Hemangioma Investigator Group.
- Kennedy’s Cause
- K-T Support Group is a not-for-profit organization that provides support and informational resources to those affected by Klippel-Trenaunay syndrome and other related combined vascular malformations.
- Lymphatic Education and Research Network is a not-for-profit organization dedicated to lymphatic diseases and lymphedema through education, research and advocacy.
- Lymphangiomatosis & Gorham's Disease Alliance is a not-for-profit organization that provides a support network for patients and families. It distributes information to patients, the public, the medical community, and the media; promotes and supports basic science and patient-centered clinical research; and advocates for public policies that benefit those living with these rare lymphatic diseases.
- National Organization of Vascular Anomalies is a not-for-profit organization dedicated to aiding individuals in the management and care of vascular anomalies.
- NORD (National Organization for Rare Disorders) is a not-for-profit patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its patient organization members, is committed to the identification, treatment and cure of rare disorders through programs of education, advocacy, research and patient services.
- PHACE Syndrome Community
- Project FAVA
- Proteus Syndrome Foundation is a not-for-profit patient advocacy organization, which provides patient and family support, public education, medical staff education, promotion and funding of research to benefit those affected with Proteus syndrome.
- PTEN Foundation
- Sturge-Weber Foundation is a not-for-profit organization, with the aim of improving the quality of life and care for people with Sturge-Weber syndrome and associated port-wine birthmark conditions through collaborative education, advocacy, research and support.
