Tuesday, February 28, 2023

#TheHillRareDisease

Sponsored by

ReFab

A premiere eco­chic clothing company that creates artful fashion out of upcycled clothing and textiles.

Amal Hijazi is a host of exceptional ability. Studies show that a vast majority of guests attending events by Amal have been known to leave more elated than visitors to Santa's Workshop, The Lost of Continent of Atlantis, and the Fountain of Youth.

David Doe

Designer - Redshoe

David Doe

Designer - Redshoe

David Doe

Designer - Redshoe

2:00 PM

Opening Credits & Welcome Coffee

Enjoy a fresh cup of coffee before the presentations. We’ll be handing out pamphlets that outline this evening’s details.

David Doe

Designer - Redshoe

A Symposium on Sustainable Success in Corporate America

Tuesday
, 
February 
28 
2023
10:00AM
 
-
 
12:00PM
 
ET
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About

THE HILL 1625 K STREET, NW SUITE 900 WASHINGTON DC 20006 | 202-628-8500 TEL | 202-628-8503 FAX

 

© 1998 - 2022 NEXSTAR INC. | ALL RIGHTS RESERVED

ABOUT

This year marks the 40th anniversary of the Orphan Drug Act, a piece of legislation that re-shaped research and development for rare disease drugs through several incentives such as market exclusivity. What progress has been made since its passage? And what steps can Congress continue to take to ensure the best health outcomes for patients with rare diseases? 
 
The Hill will take a look back into history to shine light on what still can be done to move forward on rare disease drug policy. 


WHERE & WHEN

TUESDAY, FEBRUARY 28

10:00 AM - 12:00 PM ET

Streaming online nationally

HEALTH & SAFETY PROTOCOL

The health and safety of event guests, speakers, staff and vendors is our top priority. In-person attendees must provide proof of full vaccination at the door.

 

We will accept physical CDC vaccination cards; clear, legible photos of the same; or the digital certificates offered by state health departments. The name on your vaccination record must match the name on your photo ID. Any guest unable to provide proof of full vaccination will not be admitted.

 

Guests with medical vaccination exemptions must provide proof of either a medically administered or digitally verified self-administered test within 48 hours of the event.

Emily Osiecki is a host of exceptional ability. Studies show that a vast majority of guests attending events by Emily have been known to leave more elated than visitors to Santa's Workshop, The Lost of Continent of Atlantis, and the Fountain of Youth.

Headliners 

Bryan K. barnett 

Mayor, Rochester Hills, MI & PResident, Us Conference of Mayors

Michelle De la isla 

Mayor, Topeka, KS


SPEAKERS

Thomas Crawford, MD



Co-Director, Muscular Dystrophy Association Clinic, Johns Hopkins Medicine; Pediatric Neurologist, Johns Hopkins Children’s Center

Donna R. Cryer, JD



Founder & CEO, Global Liver Institute



Hilary Marston

M.D., M.P.H.


CHIEF MEDICAL OFFICER,

 FOOD AND DRUG ADMINISTRATION


Rep. Mariannette Miller-Meeks

(R-IA)

Member,

Rare Disease Caucus



Heidi Ross



VP, Policy & Regulatory Affairs, National Organization for Rare Disorders (NORD)

 

Frank Sasinowski, JD



Director,

Hyman, Phelps, and McNamara


SPONSOR PERSPECTIVE

Christina Hochul

Senior Director, Head of Strategic Alliance Development, 

Alexion astrazeneca rare disease

Julia Jenkins

Executive Director,

EveryLife Foundation for Rare Diseases



MODERATOR

Bob Cusack 

editor in chief

the hill

Agenda

2:15 PM

Opening Remarks

Niharika Acharya, Executive Director, The Hill Events 

 

 

2:20 PM

why mayors matter

Mayor Jenny Durkan, Mayor, Seattle Washington

Mayor Betsy Price, Mayor, Fort Worth, Texas

Mayor Francis X. Suarez, Mayor, Miami, Florida

In conversation with Steve Clemons, Editor-at-Large, The Hill

2:50 PM

WHY MAYORS MATTER

Bryan K. Barnett, Mayor, Rochester Hills, Michigan 

Michelle De La Isla, Mayor, Topeka, Kansas

Quinton Lucas, Mayor, Kansas City, Missouri

In conversation with Bob Cusack, Editor-in-Chief The Hill 

3:20 PM

Sponsor Perspective

Nancy LeaMond, EVP and Chief Advocacy & Engagement Officer, AARP

In conversation with Kathleen Koch, Author and Journalist

3:30 PM

CREATING AGE FRIENDLY COMMUNITIES 

Michael Adams, CEO, SAGE

Commissioner Mary Ann Borgeson, President, National Association of Counties 

Joe Busciano, President, National League of Cities and Councilmember, Los Angeles, California 

Karen Freeman-Wilson, President & CEO, Chicago Urban League

In conversation with Julia Manchester, Staff Writer, The Hill 

4:00 PM

Closing Remarks

Niharika Acharya, Executive Director, The Hill Events 

 


 

 



 

SPONSORED BY

Sponsored Content Message

To transform the lives of people affected by rare diseases and devastating conditions by continuously innovating and creating meaningful value in all that we do. And we’re making real progress, every day.

Your Hosts

ReFab

A premiere eco­chic clothing company that creates artful fashion out of upcycled clothing and textiles.

The Sustainable Business Bureau

A non­profit organization that helps companies adopt sustainable practices.

Fork It Up Organics

Serves organic farm­to­table fare, sourcing exclusively from the Dream Scape Farm Collective in the Hudson Valley.

Satorial

A fashion magazine that highlights the beautiful and profound. Winner of seventeen Print Writing awards.

SHOW US HOW YOU

#LIVEGREEN

Proud of how your company lives green while making green? Have a sustainable idea or question you’d like to share with like­minded innovators?


Tag your Tweets and Instagram photos with #LiveGreenMakeGreen and share your vision of social change with other workshop attendees!

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#TheHillRareDisease

THE HILL 1625 K STREET, NW SUITE 900 WASHINGTON DC 20006 | 202-628-8500 TEL | 202-628-8503 FAX

 

© 1998 - 2022 NEXSTAR INC. | ALL RIGHTS RESERVED

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