At the Hemangioma and Vascular Malformation Program at Cincinnati Children’s, we encourage families to take advantage of the following resources.
The Family Support Network 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.
Our Clinical Concierge team schedules multiple medical appointments for families traveling to Cincinnati Children’s from outside the region.
Families Share Stories of Hope
At Cincinnati Children’s, we understand that it is helpful and reassuring to hear stories from families in similar situations. Read stories from other families..
The Cancer and Blood Diseases Institute hosts a week-long summer camp every year. “Hem / Onc Kids Camp” takes place 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.
Other organizations provide extensive support and education for patients and families dealing with vascular anomalies, including:
- Infantile Hemangioma, a disease awareness web site created by Pierre Fabre Pharmaceuticals Inc.
- CarePages, a free service that allows families to easily create web pages during a health challenge to keep friends and family informed.
- Cloves Syndrome Foundation , focused on improving the lives of CLOVES patients by funding Overgrowth and Vascular Anomaly research. The foundation is committed to raising public awareness and providing member support by offering educational literature and resources.
We are members of:
- Hemangioma Investigator Group, founded by a group of Pediatric Dermatologists, is dedicated to advancing knowledge regarding infantile hemangiomas and improving outcomes for affected children through excellence in collaborative research, education, and advocacy.
- Lymphatic Education & Research Network (www.lymphaticresearch.org), looking for answers for the millions of people who suffer from lymphedema and lymphatic disease. LE&RN fosters and supports research that can deepen the medical community's understanding of the lymphatic system, which is vital to the health of every individual.
- The National Organization of Vascular Anomalies, a nonprofit organization dedicated to aiding individuals in the management and care of vascular anomalies. Their website provides links to a newsletter and other useful information.
- Angioma Alliance is an organization by and for those affected by cavernous angiomas and their loved ones, health professionals, and researchers.
- Cloves Syndrome Community provides support, information and hope to children, families and their loved ones.
- Cure HHT is a worldwide, non-profit organization whose purpose is to support patients and families and educate medical professionals.
- Faces-The National Craniofacial Association, dedicated to assisting children and adults who have craniofacial disorders resulting from disease, accident, or birth.
- Lymphangiomatosis & Gorham’s Disease Alliance (LGD Alliance), works to improve the care of patients with lymphangiomatosis and Gorham’s disease by promoting research that will identify effective treatments and ultimately a cure for these diseases. The Alliance is committed to providing support to members of the patient community and their families; education for the community, professionals, and the general public; and hope to those affected by these rare lymphatic malformations.
- NORD-National Organization of Rare Disease is dedicated to creating connections between people impacted by a rare disease. Because of the rarity of these conditions it is often hard if not impossible to locate others sharing the same experiences in order to network with information, support, encouragement and understanding. This site tries to offer help to those people too often left out of the mainstream health support networks.
- Sturge Weber Foundation aims to improve the quality of life and care for people with Sturge-Weber syndrome and associated Port Wine Birthmark conditions through collaborative education, advocacy, research and friendly support.