Thanatophoric dysplasia

Organizations

Where can I get support in dealing with my baby's diagnosis of thanatophoric dysplasia?

Options for support include support groups on Facebook and overarching skeletal support group Little People of America . For a supportive environment for families who are faced with the diagnosis of a lethal disorder during pregnancy, visit Compassionate Friends .

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We've partnered with Genome Medical to provide you with access to trained and licensed genetic experts in all 50 states. These experts are ready to meet with you one-on-one and answer any questions you might have. Genome Medical is a nationwide medical practice focused on genetics and genomics. Their goal is to make it easier for people to access genetic experts and get the information they need to make informed decisions about their genetic health. To find out more about our partnership, click here. If you're located outside of the United States, click here.

Consultations are available anywhere in the U.S. by phone or video. During a consultation, the genetic counselor will answer your questions and take you through a comprehensive discussion to determine what steps and/or genetic tests would be appropriate for you. The cost of the consultation will vary, depending on whether an insurance claim is submitted for the service. You can make an appointment over the phone, or through an online process.

If you'd prefer, you can also submit questions to a Genetic Counselor by email. This service is provided by ThinkGenetic and is free.

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COSTS AND INSURANCE COVERAGE: The actual consultation is provided by our partner, Genome Medical. Their genetic counselors are specially trained and licensed healthcare providers. The initial session typically lasts for 30 minutes. The consultation, as well as any related diagnostic tests and exams, may be covered services under your health insurance. Genome Medical can submit a claim to your health insurance directly, and if you choose this option, a visit fee of $50 will be charged upfront. There are also self-pay options. More details are available from Genome Medical. [https://www.genomemedical.com/advancedcare-billing/]

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Thanatophoric dysplasia

Organizations

Where can I get support in dealing with my baby's diagnosis of thanatophoric dysplasia?

More Organizations Content

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Thanatophoric dysplasia

Organizations

Where can I get support in dealing with my baby's diagnosis of thanatophoric dysplasia?

More Organizations Content

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