Date: March 31, 2020

The National Foundation for Ectodermal Dysplasias (NFED) continues our commitment to help you “know your diagnosis” by connecting you to resources. We know that genetic testing is critically important to confirm an ectodermal dysplasia diagnosis.

For the month of March, we have collaborated with Invitae for a special genetic test promotion called, “Get a Test, Give a Test.” Invitae is a medical genetics company whose mission is to make genetic information affordable and accessible to everyone who can benefit from it.

The goal of the Get a Test, Give a Test promotion is to help your family learn which of the types of ectodermal dysplasia affects you.

Pay It Forward

And, you get it to pay it forward! If you order a genetic test through this promotion, Invitae will gift a free genetic test to the NFED. Our plan is to give away those free genetic tests in the fall in a separate promotion. You can help another family get the diagnosis they have been seeking.

How to Get a Test

This promotion is open to families in the United States. Use this link to access the Get a Test, Give a Test promotion: www.invitae.com/NFED. But, first, read below to learn all the details of the promotion.

Pre-Test Consultation

You will need to have a healthcare provider order the genetic test for you. You have two options.

  1. Invitae will provide you with a form to take to your geneticist to have the genetic test ordered. You are responsible for the cost of this consult.
  2. If you don’t have a geneticist, you can schedule a genetic counseling session with an expert through Genome Medical telehealth services. The cost for this consult is $129. You can pay in cash or submit this cost to insurance. Genome Medical staff can help you navigate your insurance options. Invitae connects you with Genome Medical when you access the promotion at www.invitae.com/NFED.

Financial Assistance for Initial Consult

If you do not have insurance, you can apply for a $100 stipend the NFED is offering to help pay for the costs associated with the initial genetic consult. The number of stipends is limited and awarded on a first come, first serve basis.

To apply, you must complete the form below and be registered with the NFED. We will notify you within 2-3 business days about whether or not you are receiving a stipend.

If you are awarded a stipend, you must send the receipt or a copy of the telemedicine appointment to kayla@nfed.org or call Kayla at 618-566-2020 with your confirmed geneticist appointment within 5 days of approval of stipend or the stipend will be forfeited. The stipend will be paid upon NFED’s receipt of email once you forward to kayla@nfed.org confirmation that Invitae received your genetic test sample.

The Genetic Test

The genetics health providers at Genome Medical who order the genetic test will help determine exactly which genetic test is most appropriate. In some cases, this may be for a single gene and in other cases, it may be a panel of several genes. If your doctor is ordering the test for you, then your doctor will help determine which Invitae test is most appropriate. 

The Invitae genetic tests are medical grade tests. The cost of the genetic test is $250. You CANNOT use insurance for this cost in this promotion.

Additional Genetic Tests for Family Members

If you or your loved one receives a positive test result, you may consider using Invitae’s Family Follow-Up Testing. They will test blood relatives of the affected person for free. Those relatives would still need the pre-test and post-test consultation and be responsible for the associated costs. Their testing must be ordered within 90 days. The genetic test in the family follow-up testing is at no cost.  Your doctor can order the family follow-up testing for you.  If you do not have a doctor to help with this, then Genome Medical can help you do this via telehealth for $99. 

The Post Test Consultation

You can also order through Genome Medical an optional after test consult to go over test results, which will cost $129. You can pay cash or submit this cost to insurance.

Start the Process

If you would like to order a genetic test through this promotion, click on the button below get get started with Invitae. If you have any questions about this promotion, please contact Becky at becky@nfed.org.

Order Genetic Test

Get Your NFED Swag

As a thank you for participating in this Get a Test, Give a Test promotion, we would like to send you a small gift. Once you have ordered your genetic test, just forward your order confirmation to kayla@nfed.org. We’ll get your gift in the mail!


Apply for NFED Stipend

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