Connecticut State Ambassador
What's Happening Now?
PATIENT ADVOCACY & ORPHAN DRUG WORKSHOP Friday, May 3, 2019 from 8:30am to 3:00pm, Hartford, Connecticut. The National Organization for Rare Disorders invites all advocates to attend and participate in the patient advocacy and orphan drug workshop.
This will be an opportunity to learn about rare disease patient advocacy and connect with NORD about current legislative actions. In addition, this workshop will feature an opportunity to speak directly with members of Congress from Connecticut about the Orphan Drug Act. This event is hosted at no cost to participants. Light breakfast and lunch will be provided. Register Today!
Would you like to volunteer to assist in hosting a local community awareness event? Do you have an opportunity for Connecticut’s Rare Action Network to attend your event? Contact your State Ambassador today and learn more. Please check back regularly for news of upcoming events and activities in Connecticut.
CT RAN in the News!
Rare Disease Day 2019:
Sofia Sees Hope: Connecticut Rare Disease Day at the Capitol
The National Organization for Rare Disorders Connecticut Rare Action Network hosted a Rare Disease Day event on February 28, 2019 at the Legislative Office Building in Hartford, Connecticut.Attendees were able to hear directly from patients, medical professionals, researchers, industry leaders and elected officials on how rare disease impacts Connecticut constituents and their families.
To view all the photos from the CT Rare Disease Day event Click Here
Connecticut needs your help!
Utilize these Rare Action resources to put rare diseases on the map in your state. If you need further assistance or have additional questions on how to take action in Connecticut, please contact your State Ambassador, Lesley Bennett.
State Report Card
In this fourth edition of NORD’s State Policy Report Card we are seeking to expand our analysis to more issues that affect the rare disease community while also providing a more targeted analysis of policies analyzed in previous editions of the report.
Scoring for State Policies
A: State policy meets all desired standards. An A grade is considered the model policy that other states should seek to enact.
B: State policy meets most, but not all desired standards
C: State policy on the given issue meets minimum standards
D: State has some policy in place, but it does not meet the standards of higher tiers
F: State has no policy provision for the relevant issue
Katharine Wade, Commissioner
Connecticut Insurance Department
PO Box 816
Hartford, Connecticut 06142-0816
Email for Assistance: firstname.lastname@example.org
State Health Insurance Consumer Assistance Program
Victoria Veltri, Healthcare Advocate
Office of the Healthcare Advocate
Consumer Assistance Program Email:
Healthcare.email@example.com or Victoria.Veltri@CT.Gov
Marketplace Structure: State
Access Health CT
280 Trumbull Street, 15th Floor
Hartford, CT 06103
Marketplace Contact: Questions@AccessHealthCT.com