Rethinking Rare Disease Systems for Women

Women are disproportionately impacted by a number of rare diseases, and women account for 60% of autoimmune patients – many of which are considered rare.

Yet, a comprehensive understanding of the impact of rare diseases on women remains severely deficient, as women have been only marginally considered in rare disease research, policy, and care.

The Society for Women’s Health Research (SWHR) recognizes the need to address this women’s health issue and created a call to action to share priority areas that if addressed could support women living with rare disease and their caregivers.

Download Call To Action

This document is intended to serve as an educational and informative resource and is not intended or implied to serve as a substitute for medical or professional advice. The Society for Women’s Health Research does not make medical, diagnosis, or treatment recommendations, nor does it endorse or promote specific screening or diagnostic tests. Patients and consumers should confirm information and consult a professional health care provider to determine individual needs. The Society will not be liable for any direct, indirect, or other damages arising therefrom.

This material was created by the Society for Women’s Health Research (SWHR) and is intended to serve as a public educational and informative resource. This material may be cited or shared on external channels, websites, and blogs, with attribution given to SWHR, or printed and displayed in its original formatted version. SWHR encourages the sharing and reposting of its content in order to spread awareness around women’s health issues. For specific questions about sharing SWHR content, please reach out to communications@swhr.org.

Sponsors

Support for this educational program has been provided by Novartis and Serepta. SWHR maintains independence and editorial control over program development, content, and work products.