RARE Toolkits

Below is a list of all of our current RARE Toolkits.




As a woman, you will experience distinct biological stages as part of your life cycle: childhood through puberty, the reproductive years, and menopause. Choosing whether or not to have a family is one of the most significant decisions you will make and either choice will affect your life in untold ways. For every woman, the choice is unique and highly personal.

The decision to have a child involves emotional, physical, psychological, financial and lifestyle considerations. You may experience a biological urge to have a child or feel influenced by societal norms or your religion. Every pregnancy comes with some degree of risk and deciding to have a child is a leap of faith for anyone.

As a woman living with a rare disorder, you have the additional implications of considering how your condition may impact a pregnancy and the degree of risk of passing on your genetic disorder to your children. There is no right or wrong answer. This toolkit was designed to help you consider this important choice by providing questions and resources to guide your decision. If you decide to have a child, it will help you plan for pregnancy and adapt to life as a mother who must also manage her own rare condition.

To further complicate matters, some women find themselves responsible for the care of both a child and an aging parent who may or may not have the same genetic disease. The toolkit also touches on the unique challenges faced by “The Sandwich Generation,” of individuals who are serving as caregivers for both their children and parents at the same time.