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May 9, 2018 @ 6:00 pm - May 11, 2018 @ 5:00 pm


The Sanford and PPALS’ PACT is an opportunity for individuals to enhance their professional development by enrolling in a comprehensive curriculum which focuses on increasing the competencies and expertise of patient advocates in the life sciences. 

Over the course of two days, attendees will receive valuable training from a faculty who are recognized as experts in patient advocacy, drug development, scientific and medical research, regulatory/compliance, communications, non-profit governance and public policy.  The curriculum has been designed to address the professional development needs of:

  • Individuals who work in the health and life sciences arena (Track I)
  • Individuals in senior leadership positions for a non-profit patient advocacy organization (Track II)

Upon completion of  PACT, a Sanford/PPALS certificate will be awarded to all participants. Track I participants are encouraged to research, design, implement and successfully complete a Capstone Project for their professional development. Track II participants may complete a Reflection paper based on their experience.

This curriculum is designed at the Level 101 for individuals who have not participated at a previous Sanford/PPALS course of study.

Dates:   May 9 to 11, 2018 (Wednesday through Friday)

I. May 9, 2018:  Evening Reception and Opening Session 6:00 pm
II. May 10, 2018: Track I & II Sessions  8:30 am CT to 5:30 pm CT
III. May 11, 2018: Track I & II Sessions  8:30 am CT to 4:30 pm CT

Location of Course:   Sanford Research Institute, 2301 E 60th Street North, Sioux Falls, SD  57104

Registration for CourseOnline registration is available through Sanford Research

Deadline for course registration is May 1, 2018.

Registration fees: includes welcome reception, lunches, dinner, refreshment breaks on Sanford campus and course materials.

Track I: Non PPALS Member: $1,250 for individuals working in an industry patient advocacy function (this registration includes a PPALS annual membership valued at $300)

Track I: PPALS Members: $950 for current PPALS members working in industry as patient advocates in life sciences

Track II: $250 for individuals in a senior leadership position for a non-profit health organization (Executive Director, Senior Staff person or
Board of Directors Chair or Co-chair).

Hotel: Reservations for rooms can be made at the Club House Hotel and Suites, 2323 S Louise Avenue, Sioux Falls, SD 57106. Please call 1-800- CLUBINN; or 1-605- 361-8700 to make your room reservations.  Additional information will be provided soon.

Travel:  Sioux Falls is serviced by Sioux Falls Regional Airport, Joe Foss Field

Curriculum Content

General Sessions: Level 101 Track I & II

  • Drug Development
  • Introduction to CoRDS Registry
  • Patient Advocacy Evolution
  • Sanford: Who We Are; What We Do

Track I: Level 101 for individuals working in Industry

  • Building Your Patient Advocacy Function
  • Clinical Trials and Patient Reported Outcomes
  • How to Best Approach Vendor Selection
  • Interacting with Advocacy Organizations and Stakeholders
  • Patient Advisory Boards
  • Public Policy: What is the role of industry in public policy?
  • The ROI of Patient Advocacy
  • Telling Your Patient Advocacy Story
  • Understanding the Best Practices and Challenges of Interacting with Non-Profit Sector

Track II: Level 101 for leaders of Patient Advocacy Organizations

  • Building and Sustaining Non-Profit Relationships
  • Communication for Patient Advocacy Organizations
  • CoRDS Registry for Patient Advocacy Organizations
  • Introduction to Rare Disease Public Policy
  • Maintaining a Patient Advocacy Organization: An Annual Check-up
  • Public Policy on State and Local Levels
  • Reimbursement and Access to Drugs
  • Understanding the Clinical Trial Process:
  • Working with Industry

Distinguished Faculty:  The Sanford/PPALS PACT Faculty is comprised of leading and well respected individuals who have a depth of experience and expertise in life sciences, healthcare and rare diseases.

  • Max Bronstein, Senior Director, Health Policy & Corporate Affairs, Audentes Therapeutics
  • Jean Campbell, Principal, JF Campbell Consultants
  • Archana Chatterjee, Head of Pediatrics, Sanford School of Medicine
  • Gissoo Decotiis, On Deputy Director, Oncology Advocacy Relations – Bayer Healthcare
  • Jill Dolgin, PharmD, Head of Patient Advocacy AGTC
  • Diane Dorman, Principal, DD Consulting
  • Patti Engel, President, Engage Health
  • Margie Frazier, Executive Director, Batten’s Disease Support & Research Foundation
  • Jayne Gershkowitz, Chief Patient Advocate, Amicus Therapeutics
  • Marlene Haffner, MD, Principal, Haffner Associates, LLC
  • Barbara Handelin, Founder, NovoKen
  • Maria Hardin, Senior Advisor, JF Campbell Consultants
  • Nancy Harris, Principal, Harris Consulting
  • David LaGreca, Principal, David LaGreca & Associates
  • Meg Leal, Esq., President, MWL Consulting
  • Austin Letcher, Senior Research Associate at the Coordination of Rare Diseases at Sanford Research
  • Nita Patel, RN, Senior Director, Professional & Patient Advocacy, Amicus Therapeutics
  • David Pearce PhD, President of Research, Sanford Health, Director Children’ Health Research Center
  • Robert Tomaino, Principal, Orphan Communications
  • Chris Smith, President, SmithSolve
  • Barbara Wedehase, MSW, Principal, Wedehase Consulting
  • Barbara Wuebbels RN, Co-Founder and Board Chair, Professional Patient Advocates in Life Sciences.

Register Now


May 9, 2018 @ 6:00 pm
May 11, 2018 @ 5:00 pm


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