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Angioma Alliance Genetic Testing Initiatives

Knowing your specific mutation can help with clinical management of your and your family members’ illness and will allow your family to participate in future clinical drug trials. It is in the interest of everyone in the Angioma Alliance patient community to support clinical diagnostic genetic testing. This is a critical way we can build a patient community that will be eligible to participate in clinical drug trials which can speed the pace of recruitment and contribute to study success.  

Letter to Give Your Doctor

In 2014, we provided a letter for individuals with insurance coverage or national health care to take to a doctor. This letter, written by the Angioma Alliance Scientific Advisory Board, explains the need for genetic testing and provides a link to a template for a letter of medical necessity a doctor may submit to an insurance company. We continue to encourage everyone who is able to have their testing covered by a third party payer to use this letter. You can find more information about obtaining genetic testing using insurance on our Insurance and Genetic Testing Laboratory Information page.

Free Genetic Testing through Angioma Alliance

Beginning on April 1, 2015, Angioma Alliance will begin offering free genetic testing to qualified American and Canadian members. To qualify:

  • You must have multiple cavernous angiomas that cannot be explained by a developmental venous anomaly (venous angioma) or a history of brain radiation for cancer.
  • You must have attempted to obtain genetic testing in the past and your private insurance, Medicare, or Medicaid has denied coverage. Alternately, you may apply if you do not have insurance coverage. In the US, if you have Medicare or Cigna Insurance, please let us know. You will not need to attempt to obtain coverage as we know genetic is not a benefit for these plans.
  • Children who can produce a two tablespoon saliva sample (requires at least 5-10 minutes of spitting) may be tested with permission of their parents. If a child is found to have a genetic mutation, biological parents must agree to submit a sample to be tested (exceptions can be made for biological parents who are not accessible).
  • You must give Angioma Alliance permission to share your picture and your story in order to create materials that can be presented to potential donors to illustrate who will benefit from their support. Angioma Alliance can change your name in promotional materials if you prefer. Your genetic test result will never be shared.
  • Only one member of an extended family will receive testing through this program. If you have another family member who already has a test result either through Angioma Alliance or another provider, you should not apply. This is an illness in which every member in a family will have the same mutation. We can help other family members arrange for testing to confirm their mutation status.

To express your interest, please register in the Susan Sukalich Angioma Alliance International Patient Registry or update your existing registration. We have added an interest question for this program. When you have indicated your interest, we will contact you with the enrollment package via email. If you do not hear from us within a week of registering, please check the spam folder of your email for an email with our enrollment packet. If it is not there, please email clee@angioma.org.

Essentially, enrollment involves:

  • asking your doctor to complete a form,
  • obtaining a CD with an MRI (we will return it to you),
  • completing an agreement form and a release of information,
  • mailing the items above to us, and 
  • answering any additonal questions via a phone call.

After your enrollment is approved, you will submit a saliva sample to our lab using a collection kit sent to you. Your results will go to your doctor who will share them with you.

We are able to reduce the cost of testing by batching 20 samples at a time for processing by the lab. While this provides a savings, Angioma Alliance will still spend $1200+ per individual. We encourage anyone who is able to make a donation to do so to support the program going forward. 

We are very excited to be moving one step closer toward a cure. We hope you’ll consider taking advantage of this opportunity.

Updated 2016 Feb 6