Comprehensive Vascular Anomalies Program (CVAP) Resources

View this webinar to learn an overview of how comprehensive, multidisciplinary care can benefit patients with vascular anomalies.

http://www.aboutface.ca/

A support group for people with facial differences. Includes information, peer-to-peer networking, workshop conference calls, and educational support.

http://www.avmsurvivors.org/

Support group for patients and families that have had an Arteriovenous Malformations (AVM).

http://birthdefects.org/

A 501(c) (3) non-profit organization that sponsors the National Birth Defect Registry and provides parents with information and support services for their children.

https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/birthmarks

Information, recommendations, active interchange, and lots of resources about port wine stains and hemangiomas. Provides a free private newsgroup or subscription to an online newsletter.

https://www.carepage.com/

A free service that allows families to easily create web pages during a health challenge to keep friends and family informed.

http://www.clovessyndrome.org/

Supports, educates, empowers and improves the lives of those affected by CLOVES Syndrome.

http://www.eparent.com

A magazine for parents of children with special needs.

http://www.faces-cranio.org/

A non-profit organization serving patients with severe craniofacial deformities resulting from birth defects, injuries, or disease. Addresses three distinct areas: Client Travel, Public Awareness and Understanding, and Information and Support

https://globalgenes.org/

Global Genes is committed to providing information, resources and connections to all communities affected by rare disease.

http://www.hht.org

HHT provides advocacy and support. Includes factual information, research updates, helpful links, and a newsletter.

http://www.infantilehemangioma.com/

A disease awareness web site created by Pierre Fabre Pharmaceuticals Inc.

http://kennedyscause.com/

Founded to raise awareness of Lymphatic Malformation, raise funds and support research for a cure.

http://k-t.org

Vascular Malformation advocacy and support. Includes factual information and resources.

https://www.lipedema.org/

Lipedema Foundation focuses on research for cause & effective treatment of lipedema.

http://www.lgdalliance.org/

Promotes research that will identify effective treatments and ultimately a cure for these diseases. Provides support to patients and their families; education and hope to those affected by these rare lymphatic malformations. **Website also has information on the International LGDA Registry for Lymphatic Malformations**

https://lymphaticnetwork.org/

LE&RN fosters and supports research regarding understanding of the lymphatic system. Website has information on clinical trials and research updates.

https://www.lmiresearch.org/

A 501(c)(3) nonprofit organization whose mission is to improve the clinical care of patients with generalized lymphatic anomaly (GLA)/lymphangiomatosis and Gorham-Stout disease by funding research focused on identifying effective therapies for treating these rare disorders of the lymphatic system.

https://lymphaticnetwork.org/

A 501(c) (3) not-for profit organization whose mission is to advance research, find the cause of and cure for lymphatic disease. Includes factual information, resources, newsletter, and a medical journal.

http://matp.pa.gov/

Assistance available to patients who are enrolled in Medicaid coverage, including non-emergency medical transportation or mileage reimbursement for outpatient appointments (local and long distance) as well as lodging and meal assistance if travelling from out of town for hospitalizations and out-patient visits.

http://lymphnet.org

Advocacy and support for primary and secondary lymphedema. Includes factual information, physician and therapy centers, resources, and a newsletter.

http://www.rarediseases.org/

An educational link for organizations and individuals concerned with a rare disorder. They monitor legislation, research diseases, award grants and network individuals.

http://www.novanews.org

Hemangioma and vascular malformation advocacy and support. Includes physician list, related support services, patient networking, blogs, and transportation services.

http://www.needymeds.org

Information on medicine and healthcare assistance programs.

https://operationrespect.org/

Includes information on the anti-bullying initiative, “Don’t Laugh at Me,” as well as professional development workshops and school assembly programs.

https://www.operationsmile.org/

This is the website for Operation Smile a not-for profit international organization that treats facial deformities.

http://www.php.com/

PHP increases the quality of life for children with special needs by providing services, resources and support for children, their families, and caregivers.

https://www.pfizerrxpathways.com/

Reimbursement Solutions, Verification, and Payment HELPline. Program to help both insured and uninsured patients access Pfizer medicines (including Rapamune/Sirolimus).

https://www.phacesyndromecommunity.org/

Support research and advocacy, networking among families, provide factual information and resources.

This organization empowers the fibro-adipose vascular anomaly (FAVA) community through outreach, education, and connection to researchers, medical organizations, and one another. Download the brochure. Visit FAVA’s website.

https://www.proteus-syndrome.org/

A 501c3 not-for-profit organization dedicated to improving the lives of Proteus patients by funding AKT1 research. We focus on providing family support in the form of education and networking individuals living with Proteus syndrome with other families and medical professionals.

https://ptenfoundation.org/

Education, financial assistance, research and awareness.

Section 504 of the Rehabilitation Act of 1973 ensures that individuals with disabilities are given protection from discrimination. Often at school, this means that a child is allowed reasonable accommodations as determined by a 504 Committee.

http://swscommunity.org/

Provides informational resources and support for families affected by SWS, which is typically a port wine stain birthmark that also has brain involvement.

https://www.ssa.gov/disability/

The SSI program makes payments to those age 65 or older, blind, or disabled persons (including children) who have limited income and resources. Social Security has a strict definition of disability for children (condition must seriously limit his or her activities; and must have lasted, or be expected to last, at least 1 year or result in death).

https://sturge-weber.org/

Support and information specific to Sturge-Weber syndrome, including Centers of Excellence, factual information and resources, and research updates. Patient information is available in English and Spanish.

https://www.uhccf.org/

A 501(c)(3) charitable organization that provides medical grants to help children gain access to health-related services not covered, or not fully covered, by their parents’ commercial health insurance plan. Families can receive up to $5,000 annually per child ($10,000 lifetime maximum per child). **See your Social Worker for assistance with application**

https://birthmark.org/

Support and advocacy, including factual information, patient networking, physician list, newsletter, transportation, and insurance advocacy resources.