Introduction

The United Mitochondrial Disease Foundation wants to continue to provide the best Mitochondrial Disease Symposium that supports those affected and their families, educates practicing physicians and provides the premier event for sharing of mitochondrial research results and clinical studies. Your input to this survey will help us improve the Symposium and ensure we meet your needs. This survey should take no more than 15 minutes to complete. We appreciate your time and help.

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* 1. Information to help us serve you better!

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* 2. How would you describe yourself (check all that apply)

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* 3. Have you attended the UMDF Symposium?

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* 4. If yes, I attend because the UMDF Symposium :

  Strongly Disagree Disagree Neither agree nor disagree Agree Strongly Agree NA
Offers relevant topics that help me care for my own or my child’s needs and become more knowledgeable on the latest therapies
Offers sessions on coping with mitochondrial disease as a family
Provides basic education on mitochondrial disease
Offers latest research reviews at a level I can understand
Offers latest clinical trial results
It takes place at a good time of the year (June)
It takes place in locations I’m willing to travel to
Provides the opportunity to meet and network with other affected families including those in my own state
Provides the opportunity to meet and interact with leading mitochondrial physicians and have my questions answered
Is at a cost I can afford

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* 5. If no, what best describes why you DO NOT attend?

  Strongly Disagree Disagree Neither agree nor disagree Agree Strongly Agree NA
Costs of the overall trip are too high
Location
Travel is difficult – I am an affected adult and long distance travel is too difficult
Travel is difficult – I have an affected child I cannot leave or bring with me due to the severity of health issues
Topics too basic
Topics too advanced
Topics not relevant
Topics too repetitive
Inconvenient time of year
Format (# of days, tracks…)
No childcare available onsite
No children’s sessions
Reputation and overall quality of the symposium
Unaware of this symposium
I get the same info other ways
CEU credits not available

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* 6. What is your preferred symposium length?

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* 7. What is your preferred symposium day length?

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* 8. Do you have a preferred day or days of the week to attend symposium? Check all that apply.

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* 9. An Awards Banquet occurs on Friday evenings with a dinner and entertainment to celebrate our progress throughout the year. What would you like to see more or less of during the Friday night celebration?

  More Less No Preference
Reception Time Pre-Dinner
Keynote Address
Awards Ceremony
Entertainment
Free Time after Awards for Networking

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* 10. Select the locations that would attract you most to attend a symposium (check all that interest you)

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* 11. What topics or types of sessions would most interest you to attend a UMDF Symposium?

  Very Interested Somewhat Interested Neutral Not Interested Not at All Interested
Mitochondrial Disease Overview–Basics of the Disease
Mitochondrial Disease Overview–Beyond the Basics for the Advanced
Potential Therapies for Patients with Mitochondrial Disease
Genetics of Mitochondrial Disease
For Adults–Ask the Mito Doc Panel Discussion (3 to 4 Mito Specialists Taking Questions)
For Pediatric–Ask the Mito Doc Panel Discussion (3 to 4 Mito Specialists Taking Questions)
Ask the Researcher–3 to 4 Mito Researchers Taking Questions about Current Research
Marriage and Stress
Financial Burdens and how to Cope
Fundraising for a Cure
Grief/ Palliative Care Sessions
Diet and Nutrition
Adult Only sessions
Teen Only Sessions
Young Adult Sessions
Caregiver Sessions
Sibling Sessions
School-related issues (ex – IEPs, how to explain mito to school staff and to students)
Managing the mito family–a session for those with multiple family members affected.
Resources–navigating the internet to find resources online and locally to help care for your loved one
Feeding issues
Other

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* 12. When attending an educational symposium, how important are the following to you?

  Very Important Somewhat Important Neutral Not Very Important Not Important at All
Printed copy of the syllabus (print materials of speaker presentations)
Electronic copy of syllabus on flash drive
WiFi in the meeting rooms

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* 13. How often would you /do you attend a Mitochondrial Disease symposium?

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* 14. What type of exhibitors do you prefer to see at meetings?

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* 15. How do you hear about the UMDF symposium? Check all that apply.

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* 16. Please provide any other feedback regarding the Symposium that may not have been covered.

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