birthmark.org

The Vascular Birthmarks Foundation (VBF) at birthmark.org provides two distinct kinds of help for families facing a vascular birthmark: a Treatment Options section that outlines possible treatment directions, and an Insurance Claims and Appeals section that helps families navigate coverage disputes. It also links out to clinical guidelines from the American Academy of Pediatrics and the American Academy of Dermatology, and maintains a directory of international laser treatment centers. VBF does not itself provide medical care or insurance decisions — it connects families to information and to appropriate medical professionals for evaluation and/or treatment.

Treatment information VBF offers

VBF's treatment content is organized around helping a family understand what options exist and where to go next, rather than prescribing a specific course.

• Treatment Options page — an overview of possible treatment directions for vascular birthmarks.
• American Academy of Pediatrics Guidelines for Hemangiomas — referenced clinical guidance for infantile hemangiomas.
• American Academy of Dermatology Guidelines of Care — referenced dermatology care guidance.
• International Laser Treatment Centers — a listing of laser treatment centers for families who may need to travel or compare locations.
• Find A Doctor — a tool to locate medical professionals who evaluate and/or treat vascular birthmarks.
• Ask the VBF Experts — a route to put a question to VBF's expert network when a family needs orientation before or between appointments.

The conditions VBF covers include hemangioma, port wine stain, venous malformation, arteriovenous malformation (AVM), Sturge-Weber syndrome, cutis marmorata telangiectatica congenita (CMTC), lymphatic malformation (lymphangiomas), Klippel-Trenaunay syndrome (KTS), and PHACE syndrome. Treatment relevance varies by condition, which is why the guidelines and doctor-finding tools matter more than any single generic answer.

How to use these resources in practice

1. Identify the specific diagnosis or suspected condition from the list above.
2. Read the Treatment Options page for that condition to understand the general landscape.
3. Check the AAP or AAD guideline linked by VBF if the condition is hemangioma-related or falls under dermatologic care.
4. Use Find A Doctor to locate a professional who evaluates and/or treats that condition.
5. If travel or a specific modality such as laser treatment is relevant, review the International Laser Treatment Centers listing.
6. If you still have questions, submit them through Ask the VBF Experts.

Expected result: you arrive at a medical appointment with a clearer sense of what to ask, or you identify the right specialist to contact in the first place.

Insurance claims and appeals guidance

VBF maintains an Insurance Claims and Appeals resource aimed at families whose insurer denies or limits coverage related to a vascular birthmark. This is guidance and information, not legal or insurance advice, and VBF does not guarantee any appeal outcome.

Use it when:

• A claim for evaluation or treatment has been denied.
• You need to understand the appeals process before responding to an insurer.
• You want a starting point before consulting your own insurance or legal professional.

Because coverage rules, plan types, and appeal deadlines vary by insurer and jurisdiction, treat VBF's material as orientation and confirm specifics with your plan documents.

Other support that surrounds treatment

Treatment decisions rarely happen in isolation, and VBF pairs its medical and insurance content with practical support:

• New Parent Packages — for families newly facing a diagnosis.
• Travel Assistance for KTS — support tied specifically to Klippel-Trenaunay syndrome.
• Support Groups and VBF Facebook Live sessions — peer and expert contact.
• Conferences & Clinics, including the annual VBF Super Clinic and International Clinics and Missions — in-person evaluation and networking opportunities.
• Fact Sheets and Informational Booklets — condensed reference material.

What VBF is not

VBF describes itself as an international charitable organization that networks families to appropriate medical professionals for evaluation and/or treatment, educates physicians and families about treatment options, supports research, mobilizes medical missions, and empowers those living with vascular birthmarks. It does not replace a treating clinician, and its insurance material does not replace your plan's own appeals process or professional advice. For a specific treatment decision, the intended path is: use VBF to get informed and connected, then have the actual evaluation and treatment handled by the medical professional you reach through Find A Doctor or Ask the VBF Experts.

The Vascular Birthmarks Foundation (VBF) at birthmark.org organizes its information around nine specific diagnoses: Hemangioma, Port Wine Stain, Venous Malformation, Arteriovenous Malformation (AVM), Sturge-Weber Syndrome, Cutis Marmorata Telangiectatica Congenita (CMTC), Lymphatic Malformation (Lymphangiomas), Klippel-Trenaunay Syndrome (KTS), and PHACE Syndrome. Each has its own page on the site, so you can start with the name you were given and read a plain-language overview before deciding what to do next.

The nine conditions VBF covers

The list mixes three kinds of things: single birthmark types (such as hemangioma or port wine stain), malformations named by the vessels involved (venous, arteriovenous, lymphatic), and syndromes that can include a vascular birthmark along with other findings (Sturge-Weber, KTS, PHACE). That distinction matters when you are reading, because a syndrome page will cover more than the mark itself.

How to use the list if you are trying to identify something

VBF's own framing is that it networks families affected by a vascular birthmark, anomaly, or related syndrome to appropriate medical professionals for evaluation and/or treatment. The site is a starting point for that connection, not a diagnostic tool.

A practical sequence:

1. Find the term that matches what you were told, or the closest match among the nine names above.
2. Read that condition's page for its basic features.
3. Note the questions the page raises for your situation.
4. Use VBF's Find A Doctor and Ask the VBF Experts routes to get a professional opinion.

If nothing on the list matches the wording you have, that is itself useful information to bring to a clinician rather than a reason to force a fit.

Where the rest of the site fits

Beyond the diagnosis pages, VBF's navigation points to:

• Medical resources — treatment options, information for parents, insurance claims and appeals, and guidelines from the American Academy of Pediatrics (for hemangiomas) and the American Academy of Dermatology (guidelines of care).
• Treatment access — Find A Doctor, Ask the VBF Expert, and a directory of international laser treatment centers.
• Conferences and clinics — national and international clinics and missions, including a 2026 Super Clinic in NYC listed as October 9–10, 2026, with registration noted as closed as of 8/17/26.
• Family resources — new parent packages, fact sheets, Facebook Live videos, support groups, and travel assistance for KTS.
• Community and advocacy — support groups, a parent advocacy network, a legislative initiative, and an adults living with vascular birthmarks network.

The organization describes itself as an international charitable organization with over 200,000 people networked into treatment, founded and led by Dr. Linda Rozell-Shannon.

What to keep in mind

The nine names above are the categories VBF chose to publish, not a complete taxonomy of every vascular anomaly. Two conditions can look similar in a photo and have different names, and some of the syndromes on the list are diagnosed by findings beyond the birthmark. Use the pages to prepare for an evaluation, and treat any specific treatment or insurance question as something to confirm with the clinician or the relevant program.

The Vascular Birthmarks Foundation (VBF) at birthmark.org offers two direct routes to medical guidance: the Find A Doctor directory for locating a specialist, and Ask the VBF Experts for submitting a question and receiving an expert response. Both are designed for families who have a new diagnosis, are weighing treatment options, or want a second opinion. VBF describes itself as an international charitable organization that networks families affected by a vascular birthmark, anomaly, or related syndrome to appropriate medical professionals for evaluation and/or treatment.

Start With Find A Doctor

Use this path when you already know you need a specialist and want to identify one.

1. Go to birthmark.org and select Find A Doctor from the main navigation.
2. Review the listed professionals and their locations.
3. Contact the practice directly to ask about evaluation, insurance, and wait times.

VBF also maintains a separate list of International Laser Treatment Centers, which is relevant if laser treatment is part of the recommended care. Note that VBF does not state that it schedules appointments or guarantees acceptance as a patient — the directory is a starting point, and the medical office handles scheduling.

If You Are Still Waiting for a Diagnosis

VBF organizes its condition information by type, including:

• Hemangioma
• Port Wine Stain
• Venous Malformation
• Arteriovenous Malformation (AVM)
• Sturge-Weber Syndrome
• Cutis Marmorata Telangiectatica Congenita (CMTC)
• Lymphatic Malformation (Lymphangiomas)
• Klippel-Trenaunay Syndrome (KTS)
• PHACE Syndrome

Reading the page for the suspected or diagnosed condition before contacting a doctor helps you ask more specific questions about evaluation and treatment options.

Ask the VBF Experts

Use this path when you have a specific question and want expert input before or alongside seeing a doctor.

• Ask the VBF Experts is a submission channel for patient families.
• There is a separate Doctor Registration entry, indicating the expert panel is made up of medical professionals.
• VBF also runs Facebook Live sessions where experts answer questions in a live format.

Upcoming Live Sessions Listed by VBF

These dates come from the site as published; confirm current schedules on birthmark.org, since sessions are added and updated over time.

Other VBF Resources Worth Knowing

• Information for Parents — orientation material for families new to a diagnosis.
• Treatment Options — an overview to review before discussing specifics with a clinician.
• Insurance Claims and Appeals — guidance for coverage disputes, a common obstacle after a treatment plan is set.
• New Parent Packages and Fact Sheets — takeaway materials you can bring to appointments.
• Support Groups and VBF Adults Living With … — peer connection for patients and families.
• Travel Assistance for KTS — relevant specifically to Klippel-Trenaunay Syndrome patients who need to travel for care.
• Conferences & Clinics — including the VBF Annual Super Clinic; the 2026 Super Clinic in NYC is listed as October 9–10, 2026, with registration noted as closed (8/17/26).

How to Choose Between the Two Routes

Practical Notes

• VBF states it has networked over 200,000 people into treatment, so the directory and expert channels are established rather than new.
• VBF does not present itself as providing medical care directly; it connects families to medical professionals for evaluation and/or treatment.
• Bring your imaging, pathology, and prior visit notes to any appointment arranged through the directory — this is general preparation, not a VBF requirement.
• If a question is urgent or your child is acutely unwell, contact emergency or urgent care rather than waiting on an expert reply.

For current doctor listings, expert submission forms, and live session links, go directly to birthmark.org and use the navigation items named above.

The Vascular Birthmarks Foundation (VBF) is an international charitable organization that connects families affected by a vascular birthmark, anomaly, or related syndrome with appropriate medical professionals for evaluation and treatment. It also educates physicians and families about treatment options, supports research, mobilizes medical missions, and works to empower people living with vascular birthmarks. If you are a parent, patient, or clinician looking for a starting point on vascular birthmarks — especially in the United States — birthmark.org is designed as a navigation and support hub rather than a direct clinical provider.

What VBF does

The organization describes its mission across several connected areas:

• Networking patients into care — matching families with medical professionals suited to their specific diagnosis. The site states that over 200,000 people have been networked into treatment.
• Education — providing information for parents, physicians, and affected families about types of birthmarks and treatment options.
• Research support — backing relevant research into vascular birthmarks and related conditions.
• Medical missions — mobilizing care in areas where specialized treatment is limited.
• Advocacy and empowerment — support groups, legislative initiatives, and programs for adults living with vascular birthmarks.

Who it serves

VBF addresses conditions across the lifespan, from newborns and children to adults. The conditions listed on the site include:

Resources available on the site

If you are trying to figure out where to start, these are the main entry points described on birthmark.org:

• Find A Doctor — a directory to locate medical professionals experienced with vascular birthmarks.
• Ask the VBF Expert — a way to submit questions to specialists.
• Treatment Options — overviews of available treatments.
• Information for Parents — guidance for families new to a diagnosis.
• Insurance Claims and Appeals — help navigating coverage disputes.
• Support Groups and VBF Adults Living With... — peer connection for patients and families.
• New Parent Packages and Fact Sheets — takeaway materials.
• Conferences & Clinics — including national conferences and international clinics and missions.
• Travel Assistance for KTS — support for patients traveling for care.
• Scholarships, advocacy networks, and awareness programs such as the anti-bullying pledge and "More Than A Birthmark."

Events and programs

VBF runs recurring events, including an annual Super Clinic (a multi-day clinic in New York City), Facebook Live sessions with experts, and an advocacy network for adults. Registration windows and dates are posted on the site — for example, the 2026 Super Clinic is listed for October 9–10, 2026, with registration noted as closed as of the site's current listing. Because dates and registration status change, check the site directly before planning around any event.

How to use the site

1. Identify the condition — start with the "Types of Birthmarks" section to find the page matching the diagnosis or suspected diagnosis.
2. Find a specialist — use Find A Doctor to locate a clinician experienced with that condition.
3. Ask a question — if you are unsure where to begin, submit to Ask the VBF Expert.
4. Check practical support — review treatment options, insurance appeals guidance, and travel assistance if relevant.
5. Connect with others — join a support group or the adults network for peer experience.

What VBF is not

VBF is a charitable organization and information network, not a clinic. It does not itself provide medical evaluation or treatment, and the site does not present itself as a substitute for a qualified medical professional. For any diagnosis or treatment decision, the appropriate step is evaluation by a clinician experienced with vascular anomalies — which is precisely the connection VBF is built to help you make.

The Vascular Birthmarks Foundation (birthmark.org) offers several concrete ways for families to get involved: joining a support or advocacy network, attending a national conference or clinic, fundraising, or donating. The right entry point depends on what you want — peer connection, in-person medical access, or financial support for the organization. VBF describes itself as an international charitable organization that networks families affected by a vascular birthmark, anomaly, or related syndrome to appropriate medical professionals, educates physicians and families about treatment options, supports research, and mobilizes medical missions.

Join a Support or Advocacy Network

If your main goal is to connect with other families or advocate for awareness, VBF lists these community channels:

• Support Groups — for peer connection among affected families.
• Parent Advocacy Network — for parents who want to advocate on birthmark-related issues.
• VBF Adults Living With... — a network for adults living with vascular birthmarks, with a listed Facebook Live session on November 12, 2026 at 12pm ET / 9am PT.
• VBF Chapters — local or regional groups under the VBF umbrella.
• VBF Global Ambassadors — an international representative role.

These are the lowest-commitment ways to get involved, since they are participation-based rather than donation-based.

Attend a Conference, Clinic, or Event

VBF runs both national and international gatherings, plus recurring virtual events:

Note that the Super Clinic registration is shown as closed for 2026, so if you want to attend a future clinic, check the Conferences & Clinics page for the next open registration rather than assuming the NYC date is still available.

Fundraise or Donate

If you want to support VBF financially, the site lists multiple giving routes:

• Donate Now — the direct donation option, also reachable via the "Donate Today" button.
• Raise Funds and Awareness — a fundraising pathway.
• Share Your Birthday and Ambassador Birthday Fundraisers — turn a birthday into a fundraiser.
• Give2myVBF Fundraisers — a dedicated fundraiser channel.
• Become a VBF Champion — a supporter role.
• Become a Sponsor — listed under Conferences & Clinics, aimed at event sponsorship.

The site does not publish pricing or payment details for these options in the material available, so confirm amounts and methods on the donation page itself.

Share Your Story or Raise Awareness

For families who want to contribute their experience or spread awareness, VBF lists:

• Share Your Story — submit a personal account.
• Awareness Tool-Kit — resources for awareness efforts.
• #PutOnYourBirthmark — an awareness campaign.
• More Than A Birthmark and the Anti-Bullying Pledge — awareness and anti-bullying initiatives.
• VBF Children's Library — a resource for children.
• Vascular Birthmarks Legislative Initiative — advocacy at the legislative level.

These are useful if you want your experience to help other families or push for broader awareness, rather than only seeking support for yourself.

Get Information Before You Commit

If you are still deciding how to engage, VBF's resource pages can help you orient first:

• Types of Birthmarks — covers hemangioma, port wine stain, venous malformation, arteriovenous malformation (AVM), Sturge-Weber syndrome, cutis marmorata telangiectatica congenita (CMTC), lymphatic malformation (lymphangiomas), Klippel-Trenaunay syndrome (KTS), and PHACE syndrome.
• New Parent Packages and Fact Sheets — introductory materials.
• Find A Doctor and Ask the VBF Experts — for medical evaluation and treatment questions.
• Insurance Claims and Appeals — guidance on insurance issues.
• Travel Assistance for KTS — support for travel related to KTS care.

A practical sequence for a newly affected family: start with the Types of Birthmarks and New Parent Packages pages to understand the condition, use Find A Doctor or Ask the VBF Experts for medical direction, then join a Support Group or the Parent Advocacy Network for peer connection. If you later want to give back, the fundraising and awareness options above are the natural next step.