a brief introduction to the hypersomnia foundation (hf) · hypersomnia foundation, inc. conflict of...

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A Brief Introduction to the Hypersomnia Foundation (HF) 7 th International Symposium on Narcolepsy September 9-13, 2018 Beverly, MA USA

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Page 1: A Brief Introduction to the Hypersomnia Foundation (HF) · Hypersomnia Foundation, Inc. Conflict of Interest Disclosures for Speakers We DO HAVE the following relationships with entities

A Brief Introduction to the Hypersomnia Foundation (HF)

7th International Symposium on Narcolepsy

September 9-13, 2018 Beverly, MA USA

Page 2: A Brief Introduction to the Hypersomnia Foundation (HF) · Hypersomnia Foundation, Inc. Conflict of Interest Disclosures for Speakers We DO HAVE the following relationships with entities

Hypersomnia Foundation, Inc.

Quality of Life: IH Patient-Identified Initiatives of Significance

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•  Shared Personal Stories in SomnusNooze

•  Education Essentials for K-12 & College Students

•  HF Patient Education Conferences

•  Physician Directory •  Website IH Information

& Publications •  Medical & Scientific

Advisory Boards •  Patient Registry at CoRDS

(Coordination of Rare Diseases at Sanford)

Page 3: A Brief Introduction to the Hypersomnia Foundation (HF) · Hypersomnia Foundation, Inc. Conflict of Interest Disclosures for Speakers We DO HAVE the following relationships with entities

Hypersomnia Foundation, Inc.

Resources for Physicians, Researchers, Scientists & Advocates

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•  Idiopathic Hypersomnia (IH) Standard Characteristics

•  Directory of IH Healthcare Providers

•  Hypersomnia Foundation’s (HF) Patient Registry at CoRDS

•  HF Research Award Program

•  Journal Article Summaries (vetted)

•  Ongoing Research Studies for Patients with IH and Related Disorders

•  Brochure about IH (vetted)

•  Access to IH Expertise:

Members, HF Medical & Scientific Advisory Boards

Page 4: A Brief Introduction to the Hypersomnia Foundation (HF) · Hypersomnia Foundation, Inc. Conflict of Interest Disclosures for Speakers We DO HAVE the following relationships with entities

Hypersomnia Foundation, Inc.

ENGAGE •  PATIENTS in Research, Drug Discovery & Drug Development Process •  ACADEMIC & INDUSTRY Leaders •  PATIENT ADVOCACY Groups

EXPAND •  International Patients, Providers, & Board Members •  Selectively Targeted Awareness Outreach

EDUCATE •  Education & Workplace Issues and Resources •  Health, Disability & Insurance Issues and Resources •  Medication Access and Finance •  IH Medical Alert Card •  Anesthesia Guide and Patient Care Plan

The Way Forward: #BeyondSleepy

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Page 5: A Brief Introduction to the Hypersomnia Foundation (HF) · Hypersomnia Foundation, Inc. Conflict of Interest Disclosures for Speakers We DO HAVE the following relationships with entities

Hypersomnia Foundation, Inc.

Conflict of Interest Disclosures for Speakers

We DO HAVE the following relationships with entities producing, marketing, re-selling, or distributing health care goods or services consumed by, or used on, patients:

Type of Potential Conflict Details of Potential Conflict

Grant/Research Support Balance Therapeutics grant in 2017

Consultant

Speakers’ Bureaus

Financial support

Other Conference support provided by: Balance Therapeutics; Jazz Pharmaceuticals; Pavilion Compounding Pharmacy, LLC; Umecrine Cognition, and Village Pharmacy of Lynnfield

The material presented in this lecture has no relationship with any of these potential conflicts