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BOARD OF DIRECTORS MEETING. March 10, 2018 Chicago, IL. Agenda. Consent Agenda. Governance Committee. Treasurer’s Report. Chief Operating Officer Update. Provided by: Leah M. Howard, J.D. March 10, 2018. Education & Outreach.

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  1. BOARD OF DIRECTORS MEETING March 10, 2018 Chicago, IL

  2. Agenda

  3. Consent Agenda

  4. Governance Committee

  5. Treasurer’s Report

  6. Chief Operating Officer Update Provided by: Leah M. Howard, J.D.March 10, 2018

  7. Education & Outreach Establishing new patient education webinar program and calendarto support priority topics of interest to the organization, to provide deeper education on topics addressed by the patient navigation center, and to complement professional education programs. Evolving live and in person patient education programs to address the current learning preferences of our patient community and ensure we are delivering high value resources while remaining conscious of limited resources. Creating resources and updating existing resources to support the improved health outcomes of the entire psoriatic disease community.

  8. Advocacy & Government Relations Advocates arechampioning access issues and advocating for additional federal resources for psoriatic disease at: • Capitol Hill Day on March 19 – 20th • Minnesota Step Therapy Lobby Day March 13th • Ohio Step Therapy Lobby Day March 14th • California Step Therapy Advocacy Day April 15th – 16th Fostering a dialogue with pharmacy benefit managers during an April 10th advocacy roundtable to explore formulary design for the psoriatic disease community and promote more appropriate coverage policies. Working in coalition to raise awareness of the challenges of living with a chronic disease and to promote legislative and regulatory solutions on complex issues such as Medicare and health care reform.

  9. Marketing & Communications Building multi-media campaign for Psoriatic Arthritis Action Monthin May to include another PsA Active, editorial, social, and online resources in support of efforts to elevate PsA. Raising awareness about NPF priorities, initiatives and programs through each public facing communication channel advance efforts toward our strategic plan goals. Hiring a new Director of Marketing & Communications to lead the team and implement the Marketing Plan now in development.

  10. Patient Navigation Center Number of PNC visitors continues to rise with total PNC visitors to date now over 13,000. Focus on “converting” one time visitors over to people served more deeply. Alignment with organization-wide education and communication efforts focused on supporting individuals living with psoriasis & psoriatic arthritis in taking action today to improve their health and better manage their disease. Identify solutions and impacts: identify solutions for process improvement, efficiency, and delivering quality service and identify the impact of our efforts on the health outcomes of our community through a large scale longitudinal survey.

  11. Other Address human resources and organizational challenges through: new orientation and onboarding program, launch of new mentoring program, expanded training staff schedule, new commitment on recruitment and retention. New legal counsel able to support us with our needs today and help take us to where we want to go in the future. Ensure the patient voice is represented in discussions of value for psoriatic disease therapies.

  12. Marketing Plan Overview

  13. Overview of Marketing Task Force • Social Velocity Report • BOD Addition of a Marketing and Communications Plan • Task Force Created • Monthly Meetings • In person meeting – Chicago • Request for Proposals from Marketing Firms • Selection of GMMB

  14. Task Force Members

  15. Proposals • GMMB • Three online focus groups (one for those with mild to moderate disease, one for severe, and one for caregivers), in-depth interviews with HCPs and researchers, development of the marcom plan (that includes editorial calendar, messaging framework, message training plan, social media plan, email newsletter strategy, partner toolkit, advertising assets and materials as well as a few “out of the box” recommendations. • Experience: client base consists of RWJ Foundation, state health exchanges (MD and WA), American Dental Association, AARP, Children’s National Medical Center, among others; they’ve worked in disease advocacy for Lupus Foundation of America, the Women’s Heart Alliance, and the American Lung Association • HMH • Research Options: • Option 1: In person focus groups with patients, caregivers and donors, as well as one-on-one interviews with HCPs • Option 2: Telephone focus groups with patients, caregivers and donors, one on one interviews with HCPs and researchers • Option 3: Video surveys with patients, caregivers, donors, HCPs and researchers • Experience:  They performed research for us as part of our health care provider market research into the PNC.   • Bloom Communications • Quantitative research on existing constituent perspectives (with patient, caregiver and donors); qualitative research that would include online focus groups (with patients, caregivers and donors); one-on-one phone interviews with providers and researchers; and an optional incremental research angle that includes interviewing patients, HCPs and researchers not yet engaged with NPF; messaging refinement; marketing strategy and plan build out. • Experience: providing PR services for us for a year; working with US Dermatology

  16. Scope of Project – Phase 1 GMMB selected; project plan includes: • Research: Advance Planning and Two-hour Working Session Includes advance planning on research recommendations and two-hour working session at the National Psoriasis Foundation (NPF) attended in-person by two GMMB staff members and remotely by one additional GMMB staff member and PerryUndem. GMMB will not bill NPF for travel time or costs to attend in the meeting in person. • Research: Analysis of NPF Data Includes review of NPF-provided research, a high-level landscape scan, and writing an assessment of opportunities and gaps. The findings will inform the focus group guide (as part of this exhibit covering phase one) and the in-depth interviews (which will be under a separate phase two exhibit). • Research: Online Focus Groups (2) Includes holding two online focus groups of participants with moderate-to-severe psoriasis, developing guide and protocols, facilitating sessions, and developing a report. NPF will facilitate recruiting through their existing email list. • Chicago Presentation Includes building out findings from analysis of NPF data and—depending on timing—synthesis of either the plan for online focus group or preliminary top-line findings from online focus groups. A GMMB staff member would present in-person in Chicago on Fri., March 9 and make their presentation slides available as a handout / leave-behind. • Strategic Counsel and Out-of-Pocket Costs Includes GMMB’s participation in biweekly calls and in NPF’s monthly marketing taskforce meeting; counsel as needed; monthly reporting, accounting, and invoicing; and office out-of-pocket costs such as printing, telephone calls, internet, shipping, etc.

  17. Project Overview To Date • Review of NPF Data • Landscape Analysis • Focus Groups • Presentation of Topline Data Still to come: • Further focus groups & interviews • Development of Marketing Plan (July 2018) • Implementation of Plan

  18. Chief Revenue Officer Report Emily Boyd

  19. Guidelines Update Joint Psoriatic Arthritis Guidelines (Presented at ACR 2017) Joint Psoriasis Guidelines

  20. Corporate Relations • Increase in advertising revenue • Addition of Psoriatic Arthritis targeted sponsors and products for the Seal Program • CORRONA contract • Starting to see fatigue in terms of our larger campaigns – plan is to reduce the number for FY19

  21. Individual Giving • Spring Appeal • PsA Specific Appeal – including PsA Active Magazine • Online Giving • Continued outreach to our 3’s,4’s and 5’s • Employee Giving currently at 74% - goal to get to 100% by end of FY18

  22. Major Gifts Looking ahead: • Moving our base to $1000 • Continue targeted outreach to the 1’s and 2’s through direct appeals and outreach • Focus on retention and personal touches (phone call or email) • Prospecting – moving constituents through the pipeline

  23. Team NPF • Hiring in 3 areas • Many programs still left in the year, including both Commit to Cure Galas, added an additional 4 programs • Moving away from the cycling/endurance model • Budget and workplans being developed with include at least 4 events (a combination of walk, cycle, bingo, runs) for each CDM • Prospecting!

  24. Development Plan FY18 Highlights: • Putting a formal moves management system in place • Additional resources in prospecting, opportunities and tracking • Increase in marketing efforts: • Donor spotlights; online giving; house ads

  25. Fundraising Training • Why do we raise money? What are our short and long term goals? • Expectations for Giving • How do we accept gifts? • Memberships, Sponsors, Corporate partners, major gifts, individual gifts, team NPF events

  26. 10 Ways to Engage • Introduce the organization to new people - Provide ten to twenty new names for the mailing list annually, especially for invitations to special events and mailing of the annual report • Host a private event or soiree to introduce potential donors to the organization • Provide entrée for staff to visit two or three close friends or colleagues—no solicitation • Attend NPF’s special events and invite your friends and colleagues. Continue to cultivate them after the event • Make your own gift or upgrade your current giving

  27. 10 Ways to Engage • Participate in cultivation efforts – taking donors or prospects to lunch, giving tours, making phone calls, etc • Help secure sponsors for Team NPF events • Keep on the lookout all year long for potential board members who could add value to the board. • Put the organization in your will, sign over an unneeded life insurance policy, or create some other type of planned gift. • Share your passion for the NPF’s mission with people in your day to day life – including other patients and providers!

  28. Questions

  29. FY18 Development Planning

  30. Medical Programs

  31. Research & Clinical Affair’s Report

  32. Research Programs Update Winter 2017 Board of Directors Meeting 1. Survey Data 2. 2018 Grants and Fellowships

  33. Survey Data

  34. Quality of Life: 2016

  35. Quality of Life- 2017

  36. Trends July 2015

  37. Grants and Fellowships

  38. 2018 Grants and Fellowships 33 Discovery 20 Early Career 16 Fellowship 15 Translational 5 PedPsO Challenge 3 PsA 1 NIH/NPF 0 Bridge* 0 Summer* *3 Bridge and 33 Summer Student Research Grants cooking as of March 6

  39. 2018 Grants and Fellowships

  40. 2014 Grants and Fellowships

  41. Grants and Fellowships Trends Summer Student Research Grants

  42. Etiology of Psoriatic Disease Nestle, et al. NEJM, 2009.

  43. 2018 Application Highlights

  44. 2018 Application Highlights

  45. 2018 Application Highlights

  46. 2018 Application Highlights

  47. 2018 Application Highlights

  48. 2018 Application Highlights

  49. NPF Scientific Advisory Committee: In the best-case scenario, with academia, industry, government, and other groups working together, in how many years can a psoriatic disease cure be achieved? (n=8) Questions?

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