RARE Champion in Advocacy, Foundation

17q12 Foundation
The Chandler Project
The Desmoid Tumor Research Foundation
Cure Rare Disease
VHL Alliance
 Emily’s Entourage
Life and Family Foundation, VA
RARE Revolution Magazine
Intermountain PKU and Allied Disorders Assciation
DDX3X
Project 8p
Soft Bones, Inc: The US Hypophosphatasia Foundation
Best Day Ever Foundation
The Alexion Charitable Foundation (ACF)
CureGRIN Foundation
Pericarditis Alliance

RARE Champion in Advocacy, Individual

Avery Allmond – Couch Pennies Foundation
Rachel Alvarez – Cure CMD
Deborah Andio – ArthritisFoundation and Founder of Avascular Necrosis Osteonecrosis Support Int’l
Kristin Archibald – NKH Crusaders
Deatra Bear
Sandra Bedrosian Sermone – ADNP KIDS RESEARCH FOUNDATION
Aaron Blocker
Shelley Bowen – Barth Syndrome Foundation
Cheryl Bradford – Stronger Than Sarcoidosis
Chandra Clark – VHL Alliance
Anthony DeVergillo – Amicus Therapeutics
Paula Evans – FAST Foundation for Angelman Syndrome Therapeutics
John Feman – Chronic Pain Partners
Charlene Fernandez – AllStripes Research
Kelsey Ferrill – Moebius Syndrome Foundation
Deborah Fowler – Soft Bones, Inc: The US Hypophosphatasia Foundation
Annie Ganot – Solid Biosciences
Georgene Glass – Dreamsickle Kids Foundation,Inc
Gina Glass – Dreamsickle Kids Foundation
Katy Gruber – The Avalon Foundation
Keith Harper – Narcolepsy Network
Kaden Heldt – The Avalon Foundation
Rich Horgan – Cure Rare Disease
Dawn Ireland – CDH International
Grace Jeffer – The Avalon Foundation
Andrena Senola – Johnson Project Purple Sarcoidosis Awareness Film
Asif Khan – Huntington disease care and cure society of Pakistan
Janeice Kille – EveryLife Foundation for Rare Diseases
Emily Kramer-Golinkoff – Emily’s Entourage
Shamar Lewis – Kids Conquering Sickle Cell Disease
Robert Long – Executive Director
Shannon Lozinksy – Chordoma Foundation
Kira Mann – MitoAction
Paul Mazur – UDN-Harvard Medical School
Amy McCooe – Wolverine Foundation
Robin Michaels
Demeshia Montgomery – Scleroderma Foundation
Felicia Morton – CGD Association of America
Christine Mutena – Rare Disease Kenya & Step by Stones Kenya
Analy Navarro Carpio
Taylor(In memorial of) Nearon – Super T’s Mast Cell Foundation
Neena Nizar – Jansen’s Disease
Amy Oliver – FamilieSCN2A Foundation
Kristi Ouimet
Effie Parks – Once Upon A Gene
Kayla Pfab – Transplant Unwrapped
Eric Phillips – The International Reflex Sympathetic Dystrophy (RSD) Foundation
Stephanie Presley – Facebook LCH pages
Hillary Savoie – The Cute Syndrome Foundation
Ieda Maria Scandelari Bussmann РAssocia̤̣o Brasileira de Porfiria
Leah Schust – FamilieSCN2A
Eliza Silver
Joseph Suchanek – IFOPA
Brittany Tedesco – Optime Care
Patricia Weltin – Beyond the Diagnosis
Kristen Wheeden – American Porphyria Foundation
Tara Zier – The Stiff Person Syndrome Research Foundation
Leah Deason – Jordan’s Guardian Angels

RARE Champion in Advocacy, Industry

Giacomo Chiesi – Chiesi Global Rare Diseases
Ericka P. Greene (Simpson) – Houston Methodist Neurological Institute
Paul Mazur – Undiagnosed Diseases Network
Chris Porter – Travere
Mary Frances Harmon – PTC Therapeutics

RARE Champion in Medical Care and Treatment

Jose Abdenur – CHOC Children’s Hospital
Caleb Bupp – Spectrum Health
Wendy K. Chung – Columbia University Medical Center, Simons Foundation
Sessions Cole – UDN-Washington University Site
Susan Hayflick – Oregon Health & Science University
Leanne Langmaid – BRIDGES Adult Transition Program
Dr. Jacqueline Larson
Hong Li – Emory University
Julie Neidich – Washington University in Saint Louis Dept of Pathology and Immunology
Traci Patterson – Holistic Centered Treatment
Elizabeth Olear – The Yale Center for XLH
Donovan Quill – Optime Care
Jill Sisco – Acromegaly Community

RARE Champion in Science and Technology

Krystyna Chrzanowska – Zaklad Genetyki Medycznej i Poradnia Genetyczna Department of medical genetics and genetic counseling Instytut “Pomnik-Centrum Zdrowia Dziecka
Julie Greenfield – Ataxia UK
Scott Harper – Nationwide Children’s Hospital Center for Gene Therapy
Rodney Samaco – Baylor
Timothy Yu – theyulab.org Harvard/BCH
Patrick Moloney – P4ML Ltd
Corrie Painter – Broad Institute
BioCryst Pharmaceuticals Research and Development Team
Jordan’s Guardian Angels, Infantile Spasms, Epilepsy Foundation Alabama, Rare Alabama

RARE Founder’s Award

Ravdeep Singh Anand – President
Michelle Erskine – The Aarskog Foundation
Kelsey Gruber – The Avalon Foundation
Paul Mazur – Undiagnosed Disease Network
Howie Hutchinson – Hope Kids of Colorado
Nicole Johnson – FOXG1 Research Foundation

RARE Rising Star

Marissa Cors – Sickle Cell Experience Live
Amber Freed – Founder
Fatemeh Hadipour – atieh
Emma Johnson – Another Helping
Thomas Peterson, PhD – ICON Clinical Research/Project 8p
Geoff Rhyne – IDefine
Leah Schust Myers – FamilieSCN2A Foundation
Cathleen Terrano – Stronger Than Sarcoidosis
Shivani Vyas
Kerry Wong – Stronger Than Sarcoidosis
Amelia Woodward

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