The Power of Participation:
Joining the International Lymphatic Disease and Lymphedema Patient Registry for Lipedema Research and Awareness
Hello, Lipedema community! It’s Leslyn Keith, back with another informative Research Update Flash Briefing. As the Director of Research and President of the Board for the Lipedema Project, I’m thrilled to share vital insights on lipedema research and awareness.
Today’s spotlight shines on the International Lymphatic Disease and Lymphedema Patient Registry & Biorepository. How does this Patient Registry contribute to lipedema research and awareness? Let’s dive in!
What is This Patient Registry?
Hosted on the Lymphatic Education & Research Network (LE&RN) website, this Registry is a gold mine of data and tissue samples from individuals diagnosed with lymphatic diseases, including lipedema. It’s a confidential database meticulously curated under the guidance of the LE&RN Board of Directors and the Institutional Review Board of Stanford University.
The Role of Dr. Stanley Rockson
Dr. Stanley Rockson, a well-known clinician and researcher, is a driving force behind this initiative. His involvement ensures the Registry’s effectiveness in enhancing healthcare professionals’ ability to identify, categorize, treat, and prevent lymphatic diseases.
Why Your Participation Matters
Here’s the call to action for our lipedema warriors! Your participation is invaluable. We often hear from many of you asking how to contribute to lipedema research. This is your chance! Although joining the Registry might take time, the satisfaction and contribution to a greater cause are immense. Your story, your experiences – they matter and can help women globally battling lipedema.
The Process: Simple and Secure
Participation involves reading and signing consent forms, ensuring your privacy and data protection. You’ll share your medical history and experiences with lipedema. Don’t worry if you lack certain tests or samples; every bit of your story contributes significantly to our understanding of lipedema.
How to Join?
To join, visit the LE&RN website (here’s the link: [LE&RN Patient Registry](https://lymphaticnetwork.org/living-with-lymphedema/researchers-need-you)). Alternatively, search for “patient registry for lymphatic disorders” online. Need help? The Lipedema Project is hosting “Registry Together” tutorials for assistance.
Your involvement in the Registry is more than just participation; it’s a step towards a brighter future for lipedema research and awareness. Together, we can make a difference.
Stay tuned for more updates, and remember, every step we take brings us closer to understanding and conquering lipedema.
Tips for Lipedema Management:
- Stay Informed: Regularly check for research updates and breakthroughs.
- Community Engagement: Join support groups or online forums for shared experiences and advice.
- Self-Care: Prioritize gentle exercises and balanced nutrition.
- Advocate: Share your story and raise awareness in your community.
Until next time, keep fighting the good fight!
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