Raise Awareness of the Financial Costs Associated with Caring for Children with Rare Genetic Diseases

By participating in this survey, you will contribute to a research paper that will quantify the financial burdens endured by parents of children affected by genetic disease. The aggregate, anonymized opinion of the community will be shared with everyone from politicians to health insurance companies and will assist in bringing about change and reforms.

Please allot approximately 30 minutes to complete this questionnaire.

    Part I: Family History

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