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. 

Letter to Give Your Doctor

We have 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

Angioma Alliance offers free genetic testing to qualified American and Canadian members who are unable to obtain 3rd party coverage and who meet certain criteria. 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 or you must have a first degree relative who has received genetic testing and found to have a CCM mutation.
  • You must have a doctor who is willing to receive the results of the genetic testing to share them with you. Angioma Alliance is not allowed to share the results directly. Your doctor will need to sign a form prior to your receiving the test kit.
  • Children may be tested with the 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). 
  • Only one diagnosed member of an extended family will receive testing through this program. If you have been diagnosed through MRI and another family member 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. 

To express your interest, please register in our Cavernous Angioma 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 additional questions via email.

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 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 2018 Dec 28