LE&RN COE Global Summit: Patient Survey

Thank you for taking a few minutes to share your experience. This survey was created by patients, for patients, to ensure that the voices of those living with lymphatic diseases help shape the future of care.

Your responses will directly inform discussions at LE&RN's inaugural Centers of Excellence Global Summit in October 2026, where clinicians, researchers, and healthcare leaders from around the world will explore ways to improve research, diagnosis, treatment, and access to high-quality care.

You do not need to have visited a Center of Excellence to participate. Whether you've received specialized care or are still searching for answers, your experience matters, and every response will help us better understand the challenges and opportunities facing our community.

Note: Lymphatic-related disease include lymphedema, lipedema, lymphatic anomalies

Name

First NameLast Name

Email

example@example.com

Remain anonymous?

Address

Street Address

Street Address Line 2

State / Province

Postal / Zip CodeCountry

1. Where do you currently receive care for your lymphatic or lymphatic-related disease?

2. How long did it take to receive an accurate diagnosis for your lymphatic or lymphatic-related disease?

3. What barriers, if any, have made it hard to access care for your condition?

Other

4. When you see a provider for your lymphedema or lymphatic disease, do you feel that they understand your condition completely — this includes not just your physical symptoms, but also the emotional and everyday impact on your life?

4a. Optional Explanation

5. Did you receive a clear care plan or explanation of your treatment options from a provider?

6. Have you ever been told about a clinical trial or research study related to your condition?

About the LE&RN Centers of Excellence program

LE&RN's Centers of Excellence (COE) are a network of clinics and hospital programs that meet high standards for diagnosing and treating lymphedema and other lymphatic diseases. The goal is to make sure that wherever you live, there is a place you can go that truly understands your condition and can offer you the best possible care.

7. Knowing the information above, which of the following matter most to you as a patient? (up to 3)

8. Overall, how well do you feel the current healthcare system is meeting your needs as a patient living with lymphedema or a lymphatic disease?

1 is Not at all well, 5 is Very well

9. What is one thing you wish your care team understood about what it's like to live with your condition?

10. What is one thing you wish your care team understood when they started treating you?