2024 NORD Breakthrough Summit Overall Event Survey Please provide your feedback below. Question Title * 1. In what capacity did you attend the NORD Rare Summit? (Select all that apply.) Patient Organization Leader or NORD Member Organization Representative Academic/Physician/Government NORD Corporate Council Member Industry (non-Corporate Council) (Pharma, Service Provider, Co-Pay, Foundation) Professional Advocate Student Speaker Poster Presenter Patient Caregiver Question Title * 2. In which ways did attending the Summit benefit you? (Select all that apply.) Learned about rare disease public policy issues relevant to my work, volunteer advocacy, and/or my life. Learned about advancements in rare disease research and orphan product development relevant to my work, volunteer advocacy, and/or my life. Learned about benefits of partnerships between patient organizations, government, industry, and academia to help rare disease patients. Learned about best practices for rare disease patient organizations to support their communities. Other (please specify) Question Title * 3. On a scale of 1-5 (1 = Very Unsatisfied to 5 = Very Satisfied), please rate the following: Very Unsatisfied Unsatisified Neutral Satisified Very Satisfied Your overall satisfaction with the NORD Rare Summit Your overall satisfaction with the NORD Rare Summit Very Unsatisfied Your overall satisfaction with the NORD Rare Summit Unsatisified Your overall satisfaction with the NORD Rare Summit Neutral Your overall satisfaction with the NORD Rare Summit Satisified Your overall satisfaction with the NORD Rare Summit Very Satisfied Question Title * 4. On a scale of 1-5 (1 = Very Unsatisfied to 5 = Very Satisfied), please rate the following: Very Unsatisfied Unsatisified Neutral Satisified Very Satisfied N/A Your satisfaction with the ease of use in navigating the conference app (Jujama) Your satisfaction with the ease of use in navigating the conference app (Jujama) Very Unsatisfied Your satisfaction with the ease of use in navigating the conference app (Jujama) Unsatisified Your satisfaction with the ease of use in navigating the conference app (Jujama) Neutral Your satisfaction with the ease of use in navigating the conference app (Jujama) Satisified Your satisfaction with the ease of use in navigating the conference app (Jujama) Very Satisfied Your satisfaction with the ease of use in navigating the conference app (Jujama) N/A Question Title * 5. On a scale of 1-5 (1 = Very Unsatisfied to 5 = Very Satisfied), please rate the following: Very Unsatisfied Unsatisified Neutral Satisified Very Satisfied N/A Your satisfaction with the availability of networking opportunities at the Summit (1:1 meetings, the Exhibit Hall, meals and networking receptions) Your satisfaction with the availability of networking opportunities at the Summit (1:1 meetings, the Exhibit Hall, meals and networking receptions) Very Unsatisfied Your satisfaction with the availability of networking opportunities at the Summit (1:1 meetings, the Exhibit Hall, meals and networking receptions) Unsatisified Your satisfaction with the availability of networking opportunities at the Summit (1:1 meetings, the Exhibit Hall, meals and networking receptions) Neutral Your satisfaction with the availability of networking opportunities at the Summit (1:1 meetings, the Exhibit Hall, meals and networking receptions) Satisified Your satisfaction with the availability of networking opportunities at the Summit (1:1 meetings, the Exhibit Hall, meals and networking receptions) Very Satisfied Your satisfaction with the availability of networking opportunities at the Summit (1:1 meetings, the Exhibit Hall, meals and networking receptions) N/A Question Title * 6. On a scale of 1-5 (1 = Very Unsatisfied, 5 = Very Satisfied), please rate the following: Very Unsatisfied Unsatisified Neutral Satisified Very Satisfied N/A The availability of support from staff during the event The availability of support from staff during the event Very Unsatisfied The availability of support from staff during the event Unsatisified The availability of support from staff during the event Neutral The availability of support from staff during the event Satisified The availability of support from staff during the event Very Satisfied The availability of support from staff during the event N/A Question Title * 7. The Summit met its overall objectives. (1 = Strongly Disagree, 2 = Disagree, 3 = Neutral, 4 = Agree, 5 = Strongly Agree) Strongly Disagree Disagree Neutral Agree Strongly Agree Discuss current public policy issues and objectives in rare disease advocacy. Discuss current public policy issues and objectives in rare disease advocacy. Strongly Disagree Discuss current public policy issues and objectives in rare disease advocacy. Disagree Discuss current public policy issues and objectives in rare disease advocacy. Neutral Discuss current public policy issues and objectives in rare disease advocacy. Agree Discuss current public policy issues and objectives in rare disease advocacy. Strongly Agree Summarize current advancements in rare disease research and orphan product development. Summarize current advancements in rare disease research and orphan product development. Strongly Disagree Summarize current advancements in rare disease research and orphan product development. Disagree Summarize current advancements in rare disease research and orphan product development. Neutral Summarize current advancements in rare disease research and orphan product development. Agree Summarize current advancements in rare disease research and orphan product development. Strongly Agree Explore the interfaces among rare disease community stakeholders and how they can work together to achieve shared goals. Explore the interfaces among rare disease community stakeholders and how they can work together to achieve shared goals. Strongly Disagree Explore the interfaces among rare disease community stakeholders and how they can work together to achieve shared goals. Disagree Explore the interfaces among rare disease community stakeholders and how they can work together to achieve shared goals. Neutral Explore the interfaces among rare disease community stakeholders and how they can work together to achieve shared goals. Agree Explore the interfaces among rare disease community stakeholders and how they can work together to achieve shared goals. Strongly Agree Question Title * 8. What did you find most valuable or impactful about the Summit program? Networking Opportunities Educational Content Rare Disease Research Insights Shared Public Policy & Advocacy Issues Discussed Patient & Caregiver Stories Other (please specify) Question Title * 9. Who was your favorite speaker, and why? Question Title * 10. What would you change about the NORD Rare Summit? Question Title * 11. Do you have any topic, speaker or other suggestions or comments to help us improve future events? Question Title * 12. Would you be willing to have a quote from your feedback shared in NORD marketing materials? Yes, you can use my quote and my name. Yes, You can use my quote, but do not include my name. No, please do not quote me. Question Title * 13. Please provide your contact information below if you would like to be entered to win a free pass to attend the 2025 NORD Living Rare Living Stronger Patient & Family Forum and Rare Impact Awards! First Name Last Name Email Address Phone Number Done
