Rare Disease Day 2016
Kansas City Town Hall Meeting
Ewing Marion Kauffman Foundation Conference Center 4801 Rockhill Road, Kansas City, MO
Monday, February 29th, 2016
8:00AM – 12:00PM
The RareKC Project will host an open-to-the-public Town Hall event at the Ewing Marion Kauffman Foundation on Monday, February 29, 2016 from 8:00AM to 12:00PM to highlight the impact of rare diseases on the Kansas City community.
February 29, 2016 marks the 9th annual International Rare Disease Day. On this day, patient organizations throughout the world will convene awareness-raising activities based on the slogan “Join us in making the voice of rare diseases heard”. Joining regional stakeholder organizations will be representatives from the National Institutes of Health, Global Genes™ and the Milken Institute/Faster Cures.
Nicole Boice, Founder and CEO of Global Genes, says “We are honored to be part of this first of it’s kind collaboration, one that could become a model for other cities across the country and around the world to truly support those impacted with rare disease. We truly value our partnership with this collaborative consortium, and we hope to be involved for many more years to come. Our goals are to promote the efforts of those that are innovating, creating out of the box collaborations all in an effort to build awareness for the incredibly large number of people living with or affected by rare disease, worldwide.”
The Town Hall event is hosted by The RareKC Project, which was founded in 2015 by regional patient, research, health care delivery, and community stakeholder institutions and organizations. The Town Hall event is the first step in a long-term regional plan to improve the lives of those challenged by rare diseases in the Kansas City metropolitan area and to establish our community as a national leader in medical research and health care delivery for rare diseases.
According to Kelly Ranallo, President and Founder of the Kansas City-based Turner Syndrome Global Alliance, “We are excited to bring together the Rare Disease Community in a collaborative grassroots effort to create a National Center of Excellence for Rare Diseases in Kansas City.”
Representative Kevin Yoder is a 5th generation Kansan who represents the Third Congressional District of Kansas, which includes Johnson County, Wyandotte County and the northeast corner of Miami County will be in attendance. Since 2011, Kevin has served on the powerful Appropriations Committee in the House of Representatives, where he currently serves as the Vice Chairman of the Transportation, Housing and Urban Development Subcommittee in addition to being a member of the Agriculture Subcommittee and Financial Services Subcommittee.
During his time in Congress, Kevin has focused on being a leading conservative voice in support of increased federal investment in biomedical research, calling for a doubling in funding at the National Institutes of Health by the end of the decade. He has been featured as a thought leader in the Science Coalition’s Science 2034 series for his tireless advocacy for the importance of NIH funding. Last year,
Kevin led more than 100 of his Republican colleagues in a letter to congressional and committee leadership advocating for the largest increase at NIH since 2003, and fought for the funding in the year- end appropriations bill, which ended up being a $2 billion increase.
Please join us in inviting him to our special Town Hall meeting!
AGENDA
- 8:00 Registration/Continental Breakfast
- 8:30 Making the Voice of Rare Diseases Heard Scott Pearl, Global GenesTM
- Kelly Ranallo, Turner Syndrome Global Alliance
- 8:45 Maintaining American Leadership in Medical Science – Delivering Cures and Therapies Congressman Kevin Yoder, 3rd Congressional District, State of Kansas – Invited
- 9:00 Rare is Common – Genetics 101
- Danny Miller, MD-PhD Physician Scientist Trainee, The Stowers Institute for Medical Research and University of Kansas Medical Center
- 9:30 Living with Rare Disease – Patient and Family Perspectives on Common Struggles Moderator – Kim Kimminau, PhD, University of Kansas Medical Center
- Kelly Ranallo, Parent, Turner Syndrome Global Alliance Stephanie Freeman, Parent, Cystic Fibrosis Foundation John Bell, Patient
- Tara Zahner, Parent
- Carolyn Macon, Parent
- 10:30 Translating Regional Strengths into Treatments and Cures
- Moderator – Lesa Mitchell, The Milken Institute/Faster Cures Wayne Carter, Kansas City Area Life Sciences Institute
- Steve Leeder, The Children’s Mercy Hospital
- Carol Saunders, The Children’s Mercy Hospital
- Stephen Shannon, Stowers Institute for Medical Research Peter Smith, University of Kansas Medical Center
- Scott Weir, Institute for Advancing Medical Innovation
- 11:30 Patients and Researchers – Partners for Life
- Gurusingham Sittampalam, Senior Advisor, National Center for Advancing Translational Sciences, National Institutes of Health
- 11:45 Hope – It’s in our Genes Audrey Pool, Patient
- 12:00 Adjourn
- Tara Zahner, Parent
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