For patients and families
Because of their complex nature, vascular anomalies call for more than medical care. In addition to our comprehensive, interdisciplinary clinical services, the Vascular Anomalies Center also provides information and support for patients and families.
Before your visit
Patients referred for infantile hemangiomas
Please send one email via the Boston Children's secure email portal to firstname.lastname@example.org with the following clinical documents:
- four to five color photographs in JPEG format of the hemangioma, including the patient’s name and date of birth
- a demographic sheet and clinical notes (the patient’s primary care provider may be able to assist you with this)
Once the photographs and clinical information are received, our team will be contact you to schedule an appointment.
Patients referred for other diagnoses
Please send the following clinical information:
- Completed questionnaire: This can be found at https://redcap.link/VascularAnomalies.
- Medical history summary: Please ask one of your physicians to provide a succinct, detailed medical history with the information necessary to review your case. If this is not possible, please send only the most recent clinical notes related to your reason for referral to the Vascular Anomalies Center. Please do not send the entirety of your medical record, as this will delay the review process.
- Color photographs: Please specify dates photographs were taken. Wide perspective photos showing the surrounding areas or whole body in addition to close ups are preferred. If the lesion has changed over time, please send photographs from early in life to the present. In addition, a face photo (headshot) is necessary. Please send the images in JPEG format to email@example.com and include the patient’s full name and date of birth in the subject line.
- All radiologic studies (e.g., MRI, x-rays) and reports: Please have the studies placed on a CD in DICOM format and mailed as part of your intake packet.
- Procedure reports related to the vascular condition: Include a copy of the operative/procedure note as part of your intake packet.
- Endoscopic studies including reports and color photographs/video: Include a copy of the reports and photographs/video as part of your intake packet.
- Pathology slides and reports: Include biopsy slides and pathology reports as part of your intake packet.
Note: Our evaluation is based on the information provided outlined in the items above. The pathology review is a specific service that will be billed to your insurance, with applicable patient cost sharing obligations (e.g., copayments, deductibles, co-insurances) as required by your insurance plan. If you are interested in learning about any applicable financial assistance that may be available for the billable service, please contact our Patient Financial Services department at 617-355-3397.
The information outlined above that must be submitted to Boston Children's can be mailed inside a package with the patient's name and date of birth. Please be sure to sign up for the MyChildren's Patient Portal prior to sending your package. Please mail your package to:
Vascular Anomalies Center
Boston Children's Hospital
Fegan Building, Third Floor
300 Longwood Avenue
Boston, Massachusetts 02115
After the clinical information and questionnaire has been received, it will be reviewed by a clinician. Please note that cases are reviewed based on the determination of the clinical team that the information from the survey (or additional uploaded documents) requires a timelier discussion — provided that the survey and all relevant information requested in the survey has been uploaded. Recommendations from the conference will be conveyed by a letter approved by a VAC physician to the parent/guardian and/or patient and/or referring physician within three to four weeks following the review. If the team determines that the recommendations require a timelier response, there will be a secure email or phone call placed to the parents/guardian and/or patient.
During your visit
Boston Children's VAC holds weekly interdisciplinary clinics. These clinics give patients with vascular tumors or vascular malformations and their families the opportunity to see more than one specialist during the same visit.
Because more complex vascular anomalies may involve multiple body systems, the ability to have multiple specialists in the room at the same time — each bringing their area of expertise — allows physicians to have an immediate back-and-forth interchange and share their assessments with one another, as well as with patients and family members. This allows us to accurately diagnose you or your child’s condition and propose a customized treatment plan that meets the individual needs of each patient.
At the end of your clinic visit, you will leave with a recommended treatment plan, and if needed, appointments for follow-up care.
The interdisciplinary clinics are held in the Longwood location.
In addition to the interdisciplinary clinics, medical clinics are held by many of the VAC physicians in various Boston Children’s locations. The VAC coordinators and nurse practitioners will work with you to determine the best clinic to meet your needs.
Nurse practitioner clinic
There are many different types of vascular anomalies, ranging from simple infantile hemangiomas to complex combination vascular malformations such as Klippel-Trenaunay syndrome. For more complex vascular anomalies, an evaluation in the interdisciplinary VAC clinic is important. For other simple vascular anomalies, a specialized nurse practitioner can provide a timely clinical evaluation.
During the nurse practitioner clinic, a patient will meet with one of our highly experienced nurse practitioners, all of whom have specialized expertise in vascular anomalies. The nurse practitioners will:
- perform a clinical evaluation
- provide a diagnosis
- discuss possible treatment
The nurse practitioners also educate patients and families about their diagnosis, help to allay fears, and empower patients and parents.
During the clinic evaluation, the VAC nurse practitioner may determine that consultation with one or more of our physician specialists is in your or your child's best interest. The nurse practitioner may be able to arrange a physician consultation on the spot, or will schedule a follow-up appointment for another time.
Depending on your child's possible diagnosis, we may perform one or more of the following during your visit:
- computed tomography (CT)
- magnetic resonance imaging (MRI)
- biopsy and microscopic diagnosis
- endoscopic examination
This information is provided as a service to visitors to our website and does not represent an endorsement by the Vascular Anomalies Center or an assurance that the information in these sites is accurate and up to date. The most reliable source of information about vascular anomalies is a specialist associated with a major hospital.
- AboutFace: a support group for people with facial differences
- Blue Rubber Bleb Nevus Facebook Support Group: provides a community for those with blue rubber bleb nevus syndrome
- CLOVES Syndrome Community: provides information and resources, fosters a supportive community, provides financial assistance, and supports research
- CLOVES Syndrome Foundation: supports research and provides information on CLOVES
- Faces: provides support, resources, education, financial support, and more for people with craniofacial differences
- The Foundation for Faces of Children: provides information and resources for people with craniofacial differences
- Greater Boston Lymphedema Network: provides support, information, and advocacy in the hope of improving the quality of life for those with lymphedema
- K-T (Klippel-Trenaunay) Support Group: provides information and support for Klippel-Trenaunay syndrome patients and their families
- Lymphangiomatosis & Gorham Disease Alliance: provides disease information, patient resources, support, and research support for those with lymphangiomatosis and Gorham's disease
- National Lymphedema Network Inc.: provides education and guidance to lymphedema patients, healthcare professionals, and the general public
- National Organization for Rare Disorders (NORD): provides information, research, advocacy, etc. for rare diseases
- National Organization of Vascular Anomalies: provides information and assistance in managing vascular malformations
- Proteus Syndrome Foundation: founded to educate, support, and raise money for grants and research toward finding a cure for Proteus syndrome
- The Sturge-Weber Foundation: acts as a clearinghouse of information on all aspects of Sturge-Weber syndrome and port wine stains.
- Vascular Birthmarks Foundation: provides educational and treatment information on vascular malformations
- VHL Family Alliance: Dedicated to improving the diagnosis, treatment, and quality of life for VHL (Von Hippel-Lindau disease) patients and their families.