Rare Action Network Ambassadors and Contact Info

To help drive the efforts of the Rare Action Network®, NORD launched the State Ambassador Program.

State Ambassadors are volunteers in a leadership position responsible for establishing and building a strong grassroots network of rare disease advocates within their state to help increase awareness of rare diseases and the challenges patients and their families face.

State Ambassadors serve as official liaisons between NORD, their state networks, state agencies and officials working towards improving the quality of life of patients and their families.

NORD Rare Action Network® team is committed to our volunteers engagement and contributions to the rare disease community. We are devoted to providing a worthwhile and impactful volunteer experience through the State Ambassador Program.

RAN ambassadors and contact information

www.rareaction.org

State RAN Ambassador Name (email) Additional information
Alabama    
Alaska Holly Ward (Holly.ward@rareaction.org)  
Arizona Melinda Burnworth (melinda.burnworth@rareaction.org)  
Arkansas Tammy Jones (tammy.jones@rareaction.org)  
California Vanessa Puopolo (vanessa.puopolo@rareaction.org)  
Colorado Katie Randall (katie.randall@rareaction.org)  
Connecticut Lesley Bennett (lesley.bennett@rareaction.org) http://rarediseases.org/runningteam   
 
RareCT.org
Delaware    
District of Columbia    
Florida Fran Hokkanen (fran.hokkanen@rareaction.org)  
Jhoanny Cardenas (jhoanny.cardenas@rareaction.org)
Georgia Beth Nguyen (beth.nguyen@rareaction.org)  
Hawaii    
Idaho    
Illinois Maria Bellefeuille (maria.bellefeuille@rareaction.org)  
Indiana    
Iowa Sharon Ponce (sharon.ponce@rareaction.org)  
Kansas    
Kentucky Patick Dunegan (patrick.dunegan@rareaction.org) http://www.cvent.com/events/nord-s-rare-action-network-patient-advocacy-and-orphan-drug-workshop-louisville-ky/event-summary-89ff01af95d647669c8ad3ca4ff93b6a.aspx
 
 
 
Louisiana    
Maine    
Maryland Lydia Seiders (lydia.seiders@rareaction.org)  
Massachusetts    
Michigan Jen O’connor (jen.oconnor@rareaction.org)  
Minnesota Erica Barnes (erica.barnes@rareaction.org)  
Mississippi Nancy Depreo (nancy.depreo@rareaction.org)  
Missouri    
Montana    
Nebraska    
Nevada    
New Hampshire Kimberly Pang (kimberly.pang@rareaction.org)  
New Jersey Julie Raskin (julie.raskin@rareaction.org)  
New Mexico    
New York    
North Carolina Kathleen Henry (kathleen.henry@rareaction.org)  
North Dakota    
Ohio Charlene York (charlene.york@rareaction.org)  
Oklahoma    
Oregon Penny Fitzmaurice (penny.fitzmaurice@rareaction.org)  
Pennsylvania Kristin Smedley (kristin.smedley@rareaction.org)  
Rhode Island    
South Carolina Kerri Nelson (kerri.nelson@rareaction.org)  
South Dakota    
Tennessee Terry Jo Bichell (terryjo.bichell@rareaction.org)  
Texas Deborah Skolaski (deborah.skolaski@rareaction.org)  
Utah Jennifer Summers & Julie Potter (jennifer.summers@rareaction.org julie.potter@rareaction.org)  
Vermont    
Virginia Jana Monaco (jana.monaco@rareaction.org)  
Washington Mary McDirmid & Sandra Sermond (mary.mcdirmid@rareaction.org sandra.sermone@rareaction.org)  
West Virginia    
Wisconson Danyelle Sun (Danyelle.Sun@rareaction.org)  
Wyoming