EXIT MPNforum Wants Your Feedback Help us plan for 2018... and join us! Question Title * 1. Overall, how well does MPNforum meet your needs? Extremely helpful -- it's a regular go-to resource Very helpful resource Moderately helpful Sometimes a little helpful No help OK Question Title * 2. What element(s) of MPNforum are MOST valuable to you? (may select more than one) Facebook page MPNforum on-line magazine MPNforum Quarterly Journal MPNforum.com website MPNsupport.com patient portal MPN Hematologist list (recommended by patients) MPN advocacy efforts (The Fatigue Project, The Zebra Coalition) Other (please specify) OK Question Title * 3. Please rate your preference/interest for future MPNforum publications: Must Keep! Good Stuff! Just Okay Let It Go Science reporting (e.g., CRISPR, CALR interviews, Shaoguang Li) Science reporting (e.g., CRISPR, CALR interviews, Shaoguang Li) Must Keep! Science reporting (e.g., CRISPR, CALR interviews, Shaoguang Li) Good Stuff! Science reporting (e.g., CRISPR, CALR interviews, Shaoguang Li) Just Okay Science reporting (e.g., CRISPR, CALR interviews, Shaoguang Li) Let It Go Other (please specify) or Comment: Investigative reporting (e.g., stories behind clinical trials) Investigative reporting (e.g., stories behind clinical trials) Must Keep! Investigative reporting (e.g., stories behind clinical trials) Good Stuff! Investigative reporting (e.g., stories behind clinical trials) Just Okay Investigative reporting (e.g., stories behind clinical trials) Let It Go Other (please specify) or Comment: MPNclinic and "How I Treat" articles by MPN specialists MPNclinic and "How I Treat" articles by MPN specialists Must Keep! MPNclinic and "How I Treat" articles by MPN specialists Good Stuff! MPNclinic and "How I Treat" articles by MPN specialists Just Okay MPNclinic and "How I Treat" articles by MPN specialists Let It Go Other (please specify) or Comment: ASH Annual Conference coverage ASH Annual Conference coverage Must Keep! ASH Annual Conference coverage Good Stuff! ASH Annual Conference coverage Just Okay ASH Annual Conference coverage Let It Go Other (please specify) or Comment: Patient profiles Patient profiles Must Keep! Patient profiles Good Stuff! Patient profiles Just Okay Patient profiles Let It Go Other (please specify) or Comment: Other: Other: Must Keep! Other: Good Stuff! Other: Just Okay Other: Let It Go Other (please specify) or Comment: OK Question Title * 4. How have you contributed to the MPNforum efforts over the years? Research & write articles Share images, interviews, information, resources to MPNforum projects Administrator of MPNforum Facebook page Donate to annual Small Gifts campaign Active on Facebook page Share, Forward MPNforum articles with broader community I haven't contributed, but I would like to! Other (please specify) OK Question Title * 5. How would you like to be involved with MPNforum in 2018? Check as many as you'd like & add new ideas in "other". Write article(s) periodically Research key topics (via internet, phone interviews, etc) Conduct interviews WordPress website assistance (templates, updates, indexing, etc.) Facebook administrator Serve on Editorial Board (set themes for MPNforum magazine & Quarterly Journal) Edit & fact check articles Communications/Outreach to MPN community (i.e., MailChimp emails, post links on related sites) Serve as Editor / Co-editor of MPNforum (oversee regular production of magazine) Champion special advocacy issue TBD (e.g., Fatigue Project, Zebra Coalition) New feature not included here (specify in "other") Cartoons or humor MPN Buddies -- connect new MPN patients to experienced MPNers and resources Monitor proposed policy changes regarding topics such as: clinical trials, treatments, access, pricing, insurance, disability, etc. (e.g., laws and regulations in the US: FDA, CMMS, VA, NIH, etc.) Sorry, but I cannot commit to active support at this time. Other (please specify) OK Question Title * 6. Roughly how much time would you be willing to commit (sorry, we can't pay) to MPNforum in 2018? Time can be during any of the 7 days/week. Don't worry ~ this isn't a formal commitment; we realize that life happens. :) 30 hours most weeks 20 hours most weeks 10 hours most weeks 4 hours most weeks 6-15 hours per month A few hours each month A few hours each quarter I can be available on a project by project basis (e.g., research or writing assignment) I want to help but not clear on my time availability I can commit to a regular, low time commitment role Other (please specify) OK Question Title * 7. Please share your contact information so we can follow up with you. Name Email Cell phone Where do you live (City, State, Country)? OK Question Title * 8. Please share your thoughts or suggestions about the future of MPNforum: OK Thank you for completing this survey! MPNforum is a cooperative patient-supported publishing and information venture. Your candid feedback and interest is helpful to our planning efforts. If you'd like to discuss further, please contact us at mpnbuddies@gmail.com. OK DONE