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Conference at a Glance

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2017 NNPDF Family Conference

Conference at a Glance


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THURSDAY – August 10, 2017

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5:00 pm:  Registration Opens

6:00 pm:  First Time Attendee Meet & Greet
7:00 pm:  Welcome Session
8:00 pm:  Activity Zone open until 9:00 pm for Celebration of Life
8:15 pm:  Celebration of Life
8:30 pm:  End of Formal Program


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FRIDAY – August 11, 2017

7:00 am:  Registration
8:00 am:  Conference Program Starts, Activity Zone Opens

MORNING PROGRAM

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JOINT SESSIONS:

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PANEL:  Advocacy and the Role of Support Organizations with Industry Partners

SPEAKERS:
Joff Masukawa – Diligentia, LLC
Tammy Russo – Continuum Clinical
Kay Holcombe – Biotechnology Innovation Organization

What you will learn: 

  • Why are individual contributors important to a patient support and advocacy organization?
  • What is the value of community members coming together on common ground?
  • What are some best practices used for successful advocacy engagement with industry partners?
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Panel:  The Importance of Unbiased Clinical Perspectives and Patient Engagement

SPEAKERS:
Barbara Burton – Ann & Robert H. Lurie Children’s Hospital of Chicago
Amanda Bergner – Ambry Genetics and Johns Hopkins School of Medicine
Tim Boyd – National Organization for Rare Disorders

What you will learn:

  • Why is individualized patient medicine essential for treatment in rare disease communities?
  • How does a rare disease community build a pipeline for therapeutic treatments?
  • How does a rare disease community balance individual and community needs to find common ground?
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BREAKOUT SESSION:
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Family Support Break Out Groups

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12:00 – 1:30 pm:  Lunch, Activity Zone Closed
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AFTERNOON PROGRAM
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JOINT SESSION:

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Panel:  Understanding the Leadership of Patient and Family Support Organizations

SPEAKERS:
Toni Mathieson – Niemann-Pick UK
Mark Dant – National MPS Society
Dena Hook – Tuberous Sclerosis Alliance

What you will learn:

  • Learn about the challenges of leading and supporting a patient community with varied needs.
  • Why professional structure and rules are required to bring a community together and to have an effective patient membership organization.
  • Different options and what it takes to build an effective partnership across community interests.
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BREAKOUT SESSION:

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Clinical Trials and Expanded Access Options

Family/Pharmaceutical Meeting Opportunities

  • Sucampo
  • Sanofi Genzyme
  • Orphazyme
  • CTD Holdings

5:30 pm:  End of Formal Program, Activity Zone Closes


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SATURDAY – August 12, 2017

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8:00 am:  Conference Program Starts, Activity Zone Opens

MORNING PROGRAM

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JOINT SESSIONS:

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NNPDF Reinvention Process – Where We Have Been/Where We Are Going

SPEAKERS:
NNPDF Board of Directors
Amy Kant – Reinvention Director
Ad Hoc Committee Members


International Patient Registry

SPEAKERS:
Jim Green – International Niemann-Pick Disease Alliance (INPDA)
Toni Mathieson – Niemann-Pick UK
Lisa Chavez – NNPDF Board Chair

What you will learn:

  • Learn about the goals and objectives of the International Patient Registry.
  • Find out about how to participate and why it will help our community.
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Vision for the Future – Family Membership Only

SPEAKERS:
NNPDF Board of Directors and Ad Hoc Transition Team

What you will learn:

  • Join us to review the vision for the future and provide feedback in small groups facilitated by Board and Ad Hoc Committee members.

12:00 – 1:30 pm:  Lunch, Activity Zone Closed
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AFTERNOON PROGRAM

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BREAKOUT SESSION:
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Family Support Break Out Groups
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JOINT SESSIONS:

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Government Benefits, Building a Safety Net for those with Disabilities

SPEAKERS:
Teri Bodeman – Benefit Boost, Inc.
Several NNPDF Families

What you will learn:

  • What government health options are available to you and how to generally access these services.
  • Practical examples from families on obtaining supportive services.
  • Being a voice for  your needs in the health insurance industry.
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Updates on Current Research

SPEAKER:
Andy Liebermann – SAB Chair, Ad Hoc Committee

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Taking Care of Yourself/Coping Strategies

SPEAKERS:  Several NNPDF Families

What you will learn:

  • Practical examples to save your marriage.
  • Practical examples to help you cope with day to day challenges.
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4:30 pm:  End of Formal Program, Activity Zone Closes
6:00 pm:  Celebration Gala with cash bar, banquet dinner and dance