The Reproductive and Perinatal Health (RPH) Initiative focuses on identifying key priorities associated with maternal fetal pregnancy-related complications in TSC and establishing recommendations for reproductive and perinatal care.
The first phase of the RPH initiative focuses on pre-pregnancy and the experiences and perceptions of women with TSC. This survey is available in English, Spanish and French. If you are a woman or a caretaker of a woman with TSC between the ages of 18 and 59 living in the US or Canada please participate in our survey.
Participate in the survey here.
If you would like to learn more about this initiative or upcoming efforts of this program, please contact us at RPH@tscalliance.org.
The goal of the RPH initiative is to develop specific recommendations for the care and management of women with TSC. The TSC Alliance brings together a team of clinicians with expertise in various areas of TSC care.
Steps of the RPH Initiative
- Review published literature to identify current knowledge and gaps in knowledge of TSC in pregnancy
- Distribute community surveys to collect experiences with TSC in pregnancy
- Create a list of recommendations based on existing literature, community priorities and expert opinion
- Disseminate findings to medical professionals and the broader TSC community
The RPH initiative is made possible thanks to the generous support from the Samuels Foundation.
For questions about the RPH program or to sign up to receive additional information about upcoming reproductive and perinatal programs, please email RPH@tscalliance.org.