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11
JUL
NORTH AMERICA
RARE DISEASES
SUMMIT 2024
Thu 11 July, 2024
Language: English


IN-PERSON EVENT IN CHICAGO, USA


VENUE: RADISSON BLU AQUA HOTEL, CHICAGO


THE SUMMIT EMPHASIZES THE POWER OF COLLABORATION AND SOLIDARITY IN FACING RARE
DISEASES.

Hosted by: Bamberg Health
REGISTER TO THIS EVENTDOWNLOAD AGENDA
missing element
SpeakersSponsorsSessionsAudienceStandsVenue

We are thrilled to announce the eagerly awaited second edition of the North
America Rare Disease Summit, set to take place in July. This prestigious event
brings together leading researchers, healthcare professionals, patient
advocates, policymakers, industry experts, and rare disease patients and
families.

The summit emphasizes the power of collaboration and solidarity in facing rare
diseases. Together, we can accelerate research, enhance patient care, and
improve outcomes, offering a brighter future for those affected by rare
diseases.


BOOK A MEETING

Key Objectives:

 1. Empowering Patients: Putting patients at the heart of our efforts, we strive
    to enhance their access to quality care and support, while advocating for
    their rights and unique challenges.

 2. Advancing Research: Renowned scientists will present groundbreaking
    discoveries, fostering cross-disciplinary collaboration to propel rare
    disease research forward.

 3. Building Collaborative Networks: A platform for stakeholders to connect,
    exchange ideas, and form strategic partnerships, bridging gaps in research,
    treatment, and support.

 4. Influencing Policy: By engaging policymakers, we seek to drive positive
    changes and better support the rare disease community.

Engaging Program Highlights: Expect a dynamic lineup of keynote speeches,
interactive workshops, panel discussions and networking opportunities. Share
experiences, learn from experts, and inspire change.

Location and Dates: Prepare to be inspired in the vibrant setting of Chicago on
July 11th.

Who will Attend:

 * Rare Disease Advocates
 * Researchers and Scientists
 * Healthcare Professionals
 * Industry Leaders
 * Policymakers and Government Representatives
 * Pharmaceutical and Biotech Companies
 * Investors and Venture Capitalists
 * Academics and Students


REGISTER TO THIS EVENT


SPEAKERS

Become a speaker


ARTI BARNES

Chief Medical Officer
Illinois Department of Public Health

info


DURHANE WONG-RIEGER

President & CEO
Canadian Organization for Rare Disorders

info


ERICA BARNES

Executive Director
Minnesota Rare Disease Advisory Council

info


SARAH GLASS

Chief Operating Officer
n-Lorem Foundation

info


ERIC KLEE

Associate Director for Research and Inno...
Center for Individualized Medicine, Mayo...

info


CHENG-KAI KAO

Chief Medical Information Officer
University of Chicago Medicine

info


KRISHNA TANGELLA

Full Clinical Professor of Pathology
University of Illinois & Medical Directo...

info


LISA M. KAHLMAN

Executive Director, Public Policy & Publ...
Ultragenyx Pharmaceutical Inc.

info


ERIN CONBOY

Director
Undiagnosed Rare Disease Clinic at India...

info


STEPHAN GRUPP

Section Chief, Cellular Therapy and Tran...
Children's Hospital of Philadelphia

info


DAVID BARRETT

Chief Executive Officer
American Society of Gene and Cell Therap...

info


MILLAN PATEL

Chief Medical Officer
Rare Disease Foundation

info


JULIA TARAVELLA

Executive Director
Rare Trait Hope Fund

info


SARAH RAYEL

Senior Director, Health Care Strategy
NORC at the University of Chicago

info


ALIREZA HAGHIGHI

Founding Director
Harvard International Center for Genetic...

info


NICOLE MILLER

Vice President, Molecular Diagnostics
Ultragenyx Pharmaceutical Inc.

info


STEPHEN KINGSMORE

President & CEO
Rady Children's Institute for Genomic Me...

info


TRACY GEORGE

President, Innovation Business Unit & Ch...
ARUP Laboratories

info


HARSHA K. RAJASIMHA

CEO and Founder
Jeeva Clinical Trials Inc

info


FRANK J. RIVERA

President
Stronger Than Sarcoidosis

info


MEGAN NOLAN

CEO, Editor-in-Chief & Rare Mom
Rare Parenting

info


BARBARA VAN HARE

President, Pattern.org & Board Member
Rare Cancer Research Foundation

info
Sponsors
Become a sponsor
Main sponsors

Sponsors

Partners



SESSIONS

Download Agenda


REGISTRATION & COFFEE

8:00 am - 8:30 am (local time)
NETWORKING

-
Speakers:

minutes

ADD TO CALENDAR




OPENING

8:30 am - 9:40 am (local time)
SESSIONS

OPENING REMARKS

Thursday, July 11, 2024
8:30 am - 8:50 am (local time)
Speakers:
Arti Barnes
Chief Medical Officer
Illinois Department of Public ...
info
Expected duration of session: 20 minutes
Language of session: English
ADD TO CALENDAR




PATIENT ADVOCACY

8:50 am - 9:40 am (local time)
SESSIONS

THRIVING THROUGH DIAGNOSTIC UNCERTAINTY: COLLABORATIONS TO OVERCOME ISOLATION
AND STRESS IN RARE DISEASE JOURNEYS

Thursday, July 11, 2024
8:50 am - 9:40 am (local time)
Speakers:
Frank J. Rivera
President
Stronger Than Sarcoidosis
info
Megan Nolan
CEO, Editor-in-Chief & Rare Mo...
Rare Parenting
info
Barbara Van Hare
President, Pattern.org & Board...
Rare Cancer Research Foundatio...
info
Expected duration of session: 50 minutes
Language of session: English
ADD TO CALENDAR




ACCESS AND POLICY FRAMEWORK

9:40 am - 11:00 am (local time)
SESSIONS

REDEFINING SOLUTIONS IN RARE DISEASES THROUGH INNOVATION AND STRATEGY

Thursday, July 11, 2024
9:40 am - 10:10 am (local time)
Speakers:

Expected duration of session: 30 minutes
Language of session: English
ADD TO CALENDAR



SMART ACCESS REFORMS FOR ORPHAN DRUGS

Thursday, July 11, 2024
10:10 am - 11:00 am (local time)
Speakers:
Durhane Wong-Rieger
President & CEO
Canadian Organization for Rare...
info
Erica Barnes
Executive Director
Minnesota Rare Disease Advisor...
info
Sarah Glass
Chief Operating Officer
n-Lorem Foundation
info
Expected duration of session: 50 minutes
Language of session: English
ADD TO CALENDAR




COFFEE & NETWORKING

11:00 am - 11:30 am (local time)
NETWORKING

-
Speakers:

minutes

ADD TO CALENDAR




DIAGNOSTICS & TREATMENT I

11:30 am - 12:25 pm (local time)
SESSIONS

SPEEDING UP DIAGNOSTICS WITH INNOVATIVE SOLUTIONS

Thursday, July 11, 2024
11:35 am - 12:25 pm (local time)
Speakers:
Eric Klee
Associate Director for Researc...
Center for Individualized Medi...
info
Cheng-Kai Kao
Chief Medical Information Offi...
University of Chicago Medicine
info
Krishna Tangella
Full Clinical Professor of Pat...
University of Illinois & Medic...
info
Lisa M. Kahlman
Executive Director, Public Pol...
Ultragenyx Pharmaceutical Inc.
info
Erin Conboy
Director
Undiagnosed Rare Disease Clini...
info
Expected duration of session: 50 minutes
Language of session: English
ADD TO CALENDAR




LUNCH & NETWORKING

12:25 pm - 1:30 pm (local time)
NETWORKING

-
Speakers:

minutes

ADD TO CALENDAR




DIAGNOSTICS & TREATMENT II

1:30 pm - 2:50 pm (local time)
SESSIONS

NAVIGATING EARLY CARE: PERSPECTIVES ON PRENATAL AND NEWBORN SCREENING FOR RARE
CONDITIONS

Thursday, July 11, 2024
1:30 pm - 2:00 pm (local time)
Speakers:
Alireza Haghighi
Founding Director
Harvard International Center f...
info
Nicole Miller
Vice President, Molecular Diag...
Ultragenyx Pharmaceutical Inc.
info
Stephen Kingsmore
President & CEO
Rady Children's Institute for ...
info
Expected duration of session: 30 minutes
Language of session: English
ADD TO CALENDAR



HARNESSING CROSS-BORDER DATA FOR BREAKTHROUGHS IN EARLY DIAGNOSTICS & GENETIC
INSIGHTS

Thursday, July 11, 2024
2:00 pm - 2:50 pm (local time)
Speakers:
Tracy George
President, Innovation Business...
ARUP Laboratories
info
Harsha K. Rajasimha
CEO and Founder
Jeeva Clinical Trials Inc
info
Expected duration of session: 50 minutes
Language of session: English
ADD TO CALENDAR




CLINICAL RESEARCH AND INNOVATION

2:50 pm - 4:10 pm (local time)
SESSIONS

ACCELERATING THE PATH TO ORPHAN DRUG DEVELOPMENT, INNOVATIVE GENE THERAPY AND
GENOMICS

Thursday, July 11, 2024
2:50 pm - 3:40 pm (local time)
Speakers:
Stephan Grupp
Section Chief, Cellular Therap...
Children's Hospital of Philade...
info
David Barrett
Chief Executive Officer
American Society of Gene and C...
info
Millan Patel
Chief Medical Officer
Rare Disease Foundation
info
Julia Taravella
Executive Director
Rare Trait Hope Fund
info
Sarah Rayel
Senior Director, Health Care S...
NORC at the University of Chic...
info
Expected duration of session: 50 minutes
Language of session: English
ADD TO CALENDAR




VENUE

Radisson Blu Aqua Hotel, Chicago


221 N COLUMBUS DR, CHICAGO, IL 60601

Book A Room - Special group rate for Bamberg Health


AUDIENCE


GOVERNMENT AGENCIES

20%
20%


RESEARCH INSTITUTIONS

20%
20%


REGULATORS AND HEALTHCARE ADMINISTRATORS

15%
15%


HEALTHCARE PROFESSIONALS

20%
20%


PATIENT ORGANIZATIONS

15%
15%


PHARMACEUTICAL INDUSTRY

10%
10%
Policy makers
Researchers
Physicians
Genetic counselors
Market Access representatives
Patient representatives

555111
Days
111444
Hours
555666
Minutes
000343543
Seconds
Powered by PQINA
Speaker


THE DISEASE IS FATAL ONLY UNTIL A TREATMENT IS DEVELOPED.

The disease is fatal only until a treatment is developed.
Julia Taravella
Rare Trait Hope Fund
Executive Director
Speaker


BRINGING TOGETHER DIVERSE EXPERTS IN RARE DISEASE DRUG DEVELOPMENT, RESEARCH,
POLICY, AND ADVOCACY IS VITAL TO ENSURE THAT WE ARE TAKING A COMPREHENSIVE
APPROACH TO IMPROVING CARE FOR THE RARE DISEASE PATIENT POPULATION.

Bringing together diverse experts in rare disease drug development, research,
policy, and advocacy is vital to ensure that we are taking a comprehensive
approach to improving care for the rare disease patient population.
Erica Barnes
Minnesota Rare Disease Advisor...
Executive Director
Speaker


HOPE SHOULD NOT BE AS RARE AS THE CONDITIONS WE TREAT.

Hope should not be as rare as the conditions we treat.
Millan Patel
Rare Disease Foundation
Chief Medical Officer
Speaker


I FIGHT FOR THOSE WHO CAN'T FIGHT FOR THEMSELVES BECAUSE YOU ARE NOT ALONE.

I fight for those who can't fight for themselves because You Are Not Alone.
Frank J. Rivera
Stronger Than Sarcoidosis
President
Speaker


CROSS-DISCIPLINARY AND CROSS-STAKEHOLDER SHARING, COORDINATION, AND
COLLABORATION IN NORTH AMERICA AND ON CURRENT AND EMERGING OPPORTUNITIES AND
CHALLENGES WILL FACILITATE THE ADVANCEMENT OF RARE DISEASES BEYOND POLICY TO
PRACTICE AND IMPLEMENTATION.

Cross-disciplinary and cross-stakeholder sharing, coordination, and
collaboration in North America and on current and emerging opportunities and
challenges will facilitate the advancement of rare diseases beyond policy to
practice and implementation.
Durhane Wong-Rieger
Canadian Organization for Rare...
President & CEO
Speaker


GENE THERAPY!

Gene therapy!
Stephan Grupp
Children's Hospital of Philade...
Section Chief, Cellular T...
Speaker


AUGMENT PATIENT CARE WITH DIGITAL HEALTH AND AI.

Augment patient care with digital health and AI.
Cheng-Kai Kao
University of Chicago Medicine
Chief Medical Information...
Speaker


EVERY INDIVIDUAL DESERVES HIGH QUALITY HEALTHCARE, ESPECIALLY OUR PATIENTS WITH
RARE DISEASES.

Every individual deserves high quality healthcare, especially our patients with
rare diseases.
Tracy George
ARUP Laboratories
President, Innovation Bus...
Attendees
REGISTER TO THIS EVENT
See the latest 10 new attendees. Register to the event to view ALL
Teri Frykenberg
NShore Patient Advocates
CEO/Founder
info
Camila Demarco
Bamberg Health
Communication Manager
info
Sarah Rayel
NORC at the University of Chic...
Senior Director, Health Care S...
info
Sarah Glass
n-Lorem Foundation
Chief Operating Officer
info
David Geller
Arcturus
VP, Pulmonary & Rare Diseases
info
Silvia Bartolone
Biogen
Reimbursement Manager
info
Erin Conboy
Undiagnosed Rare Disease Clini...
Director
info
Leeanne Vaughn
Biogen
Head - Rare Disease Reimbursem...
info

Hardik Shah
University of Chicago
Metabolomics Platform Director
info

Peter Hulick
Endeavor Health
Medical Director
info

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