Choosing to start or expand a family is one of the most significant decisions couples will make in their lives. It is a highly personal one that may be influenced by a person’s religion, societal norms, a biological urge to have a child, or even a desire to fill your home and world with more children.

The decision to have a child is filled with hopes, dreams, love, and longing. Yet it is also a decision that involves emotional, physical, psychological, lifestyle, and financial factors that must be carefully considered. This is especially true for people living with a rare disease, and those who are carriers. Always keep in mind that your decisions are uniquely your own, highly personal, and there are no right or wrong answers.

This toolkit is designed to help you and your partner explore and prepare for genetic and rare disease tests and family planning options and their associated financial considerations. It is intended for couples where one or both people:

• are living with a rare disease

• are a carrier of a rare disease

• know there is a family history of a genetic disorder

The toolkit also features tips and advice from people living with a rare disease, carriers of a rare medical condition, and experts who can help you choose different family planning paths. Their insights and shared experiences, together with the information and resources provided, will help you choose the family planning approach that is healthiest, safest, and best for your family and your financial situation.

Consider this a high-level guidebook with links to credible resources for you to dive into a wide range of topics and questions.

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