Vascular Anomalies Resources for Families

At the Vascular Anomalies Center at Children’s Hospital Colorado, we are aware of the challenges that come with a vascular anomaly. From the smallest bump to the largest birthmarks, our specialists work with you to find the best treatment and care options for your child.

In addition to medical treatment, we believe education and social support are healing tools that can help your child live their healthiest, happiest life. The resources below provide excellent insights into specific vascular anomalies and can connect you with support groups that can help your child and family understand their condition.

Vascular anomalies support and educational groups

AVM Survivors Network

The AVM Survivors Network is a support group for patients with arteriovenous malformations (AVM) and their families.

CLOVES Syndrome Community

The CLOVES Syndrome Community supports, educates, empowers and improves the lives of those affected by CLOVES, which stands for congenital, lipomatous, overgrowth, vascular malformations, epidermal nevi and spinal or skeletal anomalies or scoliosis.

CLOVES Syndrome Foundation

The CLOVES Syndrome Foundation is focused on improving the lives of patients by funding overgrowth and vascular anomaly research on CLOVES, which stands for congenital, lipomatous, overgrowth, vascular malformations, epidermal nevi and spinal or skeletal anomalies or scoliosis.

Cure HHT

The Cure HHT organization seeks to find a cure for hereditary hemorrhagic telangiectasia (HHT) while saving the lives and improving the well-being of individuals and families affected by the disorder.

International Society for the Study of Vascular Anomalies (ISSVA)

The International Society for the Study of Vascular Anomalies (ISSVA) was formed to promote clinical and scientific research concerning all aspects of vascular anomalies.

Genetic and Rare Disease Information Center (GARD)

The Genetic and Rare Disease Information Center (GARD) is a program of the National Center for Advancing Translational Sciences (NCATS) that provides access to current, reliable and easy-to-understand information about rare or genetic diseases.

K-T Support Group

The K-T Support Group provides support and resources for people with Klippel-Trenaunay syndrome and related conditions.

Lymphangiomatosis & Gorham’s Disease Alliance

The Lymphangiomatosis & Gorham’s Disease Alliance seeks to bring hope to and improve quality of life for patients with generalized lymphatic anomaly (GLA), also known as lymphangiomatosis, kaposiform lymphangiomatosis (KLA) and Gorham-Stout disease (GSD) by providing support to members of the patient community and their families. The Alliance does this by educating the community, medical professionals and the general public and by supporting research that will improve understanding of these diseases and establish best practices for their diagnosis and management.

Lymphatic Education & Research Network

The Lymphatic Education & Research Network fights lymphatic diseases and lymphedema through education, research and advocacy.

National Organization for Vascular Anomalies (NOVA)

The National Organization for Vascular Anomalies (NOVA) serves as an educational resource for individuals affected by vascular anomalies.

Project FAVA

Project FAVA is a nonprofit patient advocacy group that promotes awareness of fibro-adipose vascular anomalies, educates, advances research and connects FAVA patients to the medical community and to others with the same condition.

The Sturge-Weber Foundation

The Sturge-Weber Foundation strives to improve the lives and care for people with Sturge-Weber syndrome and associated port wine birthmark conditions through collaborative education, advocacy, research and friendly support.

The Vascular Birthmarks Foundation

The Vascular Birthmarks Foundation strives to give hope and make a difference in the lives of families affected by vascular birthmarks.

Frequently asked questions (FAQ) about vascular anomalies

What caused my child’s vascular anomaly?

Many vascular anomalies form while a baby is developing in the womb. Vascular anomalies are not caused by something the mother did or didn’t do during pregnancy. Some types of vascular anomalies are genetic and can be inherited from parents.

My child receives a lot of questions about their vascular anomaly. How do I help them handle this?

We encourage teaching children proper medical terms for their vascular tumor or malformation. We recommend that kids and families use these medical terms to talk about the vascular anomaly. We encourage children to accept their vascular anomaly as a birthmark. Everyone has a birthmark. It’s important to embrace the things that make us different and unique.

Does my child have to stop doing the activities they love because of their vascular anomaly?

Generally, we encourage all activities. Certain activities can cause symptoms related to the vascular anomaly to get worse. We can help you and your child decide what activities are okay. Our team encourages children to continue doing what they enjoy.

What is the lymphatic system?

Many vascular anomalies are associated with malformations or irregularities within the lymphatic system. Watch the videos below to learn about the lymphatic system and lymphatic malformations.

What are lymphatic malformations?

Contact us at 720-777-8628 or VAC@childrenscolorado.org with any questions you may have about your child’s vascular anomaly.