In November 2017, The LAM Foundation will convene a conference called the “Patient Benefit” Research Conference, in which patients and experts will collaborate to identify the most important mental and physical health issues that LAM patients face every day, and develop plans to tackle those that can potentially be solved in less than five years.  This conference will run concurrently with LAMposium LA, and our hope is to raise sufficient funds at the Breath of Hope Gala to support the most promising projects developed at the Patient Benefit conference.

To help us prepare for the conference, we are seeking insights from LAM patients.  Below are some questions that are designed to be thought-provoking and open-ended.  Stories of personal struggles with LAM and the impact it has on your life will help us set the priorities for the meeting.  You can pick and choose the questions you would like to answer, or make up your own.

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* What are the five most challenging aspects of living with LAM?

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* If you could present to a room filled with experts who are willing to work on the problem that most limits your quality of life, what would you ask them to focus on?

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* If there was an “all-knowing” LAM clinician/scientist, what questions would you ask about your case of LAM?

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* Name the top five LAM symptoms you experience that limit you, and list them in order from most bothersome to least bothersome.

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* What is the most frustrating thing you have to deal with each day (or routinely) related to LAM?

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* What products, services or innovations could be developed to improve your life with LAM in the next 1-5 years?

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* The symptom or aspect of life with LAM that is most under-appreciated by my doctor is …

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* What would help your LAM physician and health care providers do a better job of taking care of you?

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* Patients will be an integral part of the November 9-12, 2017 LAM meeting in Los Angeles, CA.  Do you think you will be able to attend and actively participate in the meeting?

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* Any additional questions or ideas you would like to share?

Please sign back in again if you have additional ideas you would like to share!  You can complete as many times as you like.

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