A Monumental Step Forward for Lymphatic Research:
Your Voice Matters!
Hi everyone, it’s Leslyn Keith, I’m the Director of Research and President of the Board for the Lipedema Project. We want to share with you some exciting news about a major development in the world of Lipedema with another lymphatic research update! We’re going to talk about the first-ever National Commission on Lymphatic Diseases, what it means for those of us living with conditions like lipedema, and how you can make your voice heard to help shape the future of research and care.
The National Commission on Lymphatic Diseases: A New Dawn for Lymphatics
This is a historic moment. The National Institutes of Health (NIH) has established the first commission dedicated to lymphatic diseases since the 1990s, and it’s the first one ever focused specifically on lymphatics. This is a big deal because, as Dr. Stanley Rockson points out, “it is high time we started recognizing the importance of lymphatics.”
The Commission is made up of researchers, clinicians, and patients like you, and it’s on a mission to identify gaps in research and any obstacles that might be hindering progress. Their ultimate goal? To improve the prevention, diagnosis, and treatment of lymphatic diseases.
Why Lymphatics Matter: The Mortar that Holds Us Together
Dr. Rockson’s analogy of the brick wall and mortar perfectly captures the role of lymphatics in the body. Just like mortar is essential for the structure and function of a wall, lymphatics are essential for the overall health and function of our bodies. They support cellular and organ function, yet their importance is often overlooked. This commission aims to change that.
Your Input Is Needed: Shape the Future of Lymphatic Research
Here’s where you come in! The Commission wants to hear from you. They have just issued a Request for Information (RFI) from the public, and your input is invaluable. This is your chance to help them better understand the burdens of lymphatic diseases and how they can best address them.
Request for Information (RFI)
The Commission has issued a public Request for Information (RFI), and your feedback is invaluable. They want to know how they can best support the lymphatic community and advance research in this field. Here’s what you can share your thoughts on:
- Community Inclusion: Suggest groups and organizations to engage in outreach, such as patient advocacy groups like Lipedema Simplified and the Lipedema Project.
- Educational Imperatives: Identify the types of information needed to promote lymphatic health, where these resources should be available, and even advocate for the inclusion of lymphatic diseases like lipedema in medical school curricula.
- Patient Tools: Share ideas on how different tools can help patients manage their health and where these can be accessed. For example, suggest the wider use of self-assessment surveys like Lipedema Simplified’s Do You Have Lipedema? Quiz.
- Scientific Advancement: Point out gaps in research that need to be addressed, such as the genetic basis of lipedema, the role of hormones, nutritional interventions, and the differences between lipedema fat and other types of fat. Also, mention concerns about access to current treatments.
You have until June 28th to submit your feedback via the RFI link: https://rfi.grants.nih.gov/?s=663a43f2f5e57a5a12021e82
Your experiences and insights can help shape the Commission’s recommendations, which could ultimately lead to new diagnostic tests, treatments, and even cures. So please, take a few minutes to share your thoughts and make your voice heard.
Don’t Miss This Opportunity!
This is a pivotal moment for the lymphatic community. The establishment of this commission represents a significant step forward in the fight against lymphatic diseases. It’s a chance for us to raise awareness, drive research, and ultimately improve the lives of those affected by these conditions. Your participation in the RFI is crucial to this effort.
Remember, your voice matters! Share your experiences, your needs, and your hopes for the future of lymphatic research and care.
Together, we can make a real difference.
You can also send your questions or submissions to [email protected].
Let’s seize this opportunity and work together towards a brighter future for lymphatic health!
For even more helpful information, be sure to check the Lipedema Simplified Calendar for upcoming events and activities that can support you on your journey. Lipedema Simplified Calendar: https://lipedema-simplified.org/
~ Leslyn Keith, OTD, CLT-LANA
Board President, Director of Research | The Lipedema Project