Exit this survey Patient Organization Survey Question Title * 1. Organization Name Question Title * 2. Disease(s) served by your organization Question Title * 3. First name Question Title * 4. Last name Question Title * 5. Title Question Title * 6. State Question Title * 7. Zip code Question Title * 8. Email address Question Title * 9. Organization's phone number Question Title * 10. Does your organization have paid staff? Question Title * 11. What resources or services would be helpful to you in achieving your organization's mission? Question Title * 12. Congress has passed legislation allowing more patient input in the FDA's review process. How familiar are you with the FDA's regulatory process for reviewing and approving drugs for rare diseases? no knowledge somewhat familiar very familiar extremely knowledgeable no knowledge somewhat familiar very familiar extremely knowledgeable Question Title * 13. What do you believe are the main clinical or regulatory challenges of the current FDA regulatory process in the development of treatments for your disease? Question Title * 14. If there were ONE thing you believe needs to change about legislative and regulatory policy, that you feel the EveryLife Foundation should focus on in our next CureTheProcess campaign, what would it be and why? Question Title * 15. Please indicate what types of communication you would like to receive from our organization: General Newsletter Action Alerts Scientific/Educational Workshops Art Contest/Gallery Events Rare Disease Legislative Advocates (RDLA) Question Title * 16. THANK YOU for taking the time to let us know more about you and what issues you feel are important! If you have a question or comment, please use the space below: Done