The goal of our patient task force is to improve the sexual and reproductive health (SRH) for those with CF. We hold interactive virtual meetings where experts offer a presentation on a variety of SRH topics followed by breakout sessions to identify and prioritize research priorities.
Sharing the Patient Experience
Many important questions about female reproductive and sexual health remain unasked, and have historically not been addressed as part of routine CF care. But it’s important to know, you are not alone in this.
The patient perspective is invaluable in helping clinicians and researchers understand what women with CF face. Many women do not know that symptoms they experience may be related to CF, or their CF medications. Plus, drug trials often are unable to adequately answer questions about female reproductive health beyond basic safety. Together, patients and clinicians can help to set standards of care and create guidance for conversations about these important yet sensitive topics.
CFReSHC hosts two hour Patient Task Force meetings to discuss CF-SRH related topics. We engage virtually to comply with cross infection guidelines and to allow participants to attend regardless of their time zone.
- Furnish evidence based, extant information about CF-SRH topics provided by knowledgeable presenters.
- Build community and support by providing a space for sharing personal experiences.
- Establish a forum for open discussions on sensitive topics.
- Allow women to articulate their needs for further research
- Promote the improvement of SRH-related standards of care.
Previous Meeting Topics
May 14, 2020,. 1:30 – 3:30 p.m. EDT
April 29, 2020, 3:00 – 5:00 p.m. EDT
May 18, 2019 12-2 p.m. EST
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