My wife, who is from Thailand, and I have visited several cities in the United States over the last three months. As we head back to Thailand, I reflect on my experiences with the many women who have Primary Ovarian Insufficiency (POI) and who took the time out of their busy lives to meet with me and share their perspectives. I found these shared experiences incredibly valuable and rewarding and I hope they did, too.
As you may know, the Mary Elizabeth Conover Foundation has been supporting a private Facebook group for women dealing with the challenges of POI. The group is “A Community Resource for Primary Ovarian Insufficiency (POI).” The group serves as an authoritative resource and community for women who want to learn more about the evidence regarding the evaluation and management of the disorder.
Having a rare disorder can be an isolating experience, but the power of community can make a significant difference in the lives of those facing often unique challenges. When individuals with rare disorders come together, they can share their experiences, offer emotional support, and provide valuable information about their condition, including reliable resources and providers. This senseof community can help individuals feel less alone and more empowered as theynavigate the challenges of living with a rare disorder.
Communities of individuals with rare disorders can also be a powerful force in advocating for their needs and raising awareness about their condition. They can work together to educate healthcare providers, policymakers, and the public about their situation and challenges. This work can lead to improved access to healthcare, increased funding for research, and a greater understanding of the unique needs of individuals with rare disorders.
Becoming part of the My28Days POI community offers opportunities to organize community-based participatory efforts. Community-based participatory research(CBPR) is a research approach that involves active collaboration between researchers and community members. This approach recognizes that the community is a valuable partner in the research process and that engaging community members can help ensure that the research is relevant, respectful, and responsive to the community’s needs.
By involving women with POI and their communities in the research process, CBPR can ensure that the research effort focuses on the issues that matter most to women with POI and that the results are more likely to be applicable and useful in real-world settings.
Ultimately, CBPR has the potential to improve the lives of women with POI by producing research that is more relevant, accessible, and impactful. My28Days is happy to be part of the solution and encourages women and their support teams to advocate on behalf of themselves and each other.
Take care and be well,
Dr. Lawrence M. Nelson, MD, MBA
Director, My 28 Days® Initiative
President, Mary Elizabeth Conover Foundation, Inc.