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Lesley Bennett
Connecticut State Ambassador
[email protected]

What's Happening Now?

  Saturday, December 7, 2019 from 11:00a.m. – 2:00 p.m.
NORD Headquarters, 55 Kenosia Avenue, Danbury, CT 06810

Connecticut Rare Action Network invites all rare disease patients, caregivers, family members, patient organizations, healthcare professionals and elected officials to celebrate the holiday season and connect with rare disease community members here in Connecticut.

All are welcome. This is a family friendly event. Refreshments will be served.
Introductions & open discussion begins at 12:00p.m.

Please RSVP to Kristen Angell at [email protected]g or 203.304.7251
Walk-ins welcome too!

at Hospital for Special Care, New Britain, CT
Wednesday, December 18, 2019 from 6:00p.m. – 8:00p.m.
Hospital for Special Care, 2150 Corbin Avenue, New Britain, CT 06503

If you, a family member, or a friend has a rare disease, please join us for an open discussion and a chance to meet other families dealing with a rare disease.

Although each rare disease is different, the challenges many Connecticut  families face caring for a loved one with a rare disease are similar including: problems obtaining a diagnosis or finding appropriate medical care; trouble dealing with state agencies or health insurers; and difficulty affording medications or obtaining specialized care.

Representatives from state agencies  and the CT General Assembly are being invited to participate in our discussion about available state resources for rare disease families, and state legislation (or policy changes) needed to improve the lives of those living with a rare disease.

For more information or to RSVP email [email protected]

CT RAN in the News!

Past Events

Connecticut Rare Action Network held a Patient Advocacy & Orphan Drug Workshop on May 3 in Hartford. Advocates in attendance learned about the importance of the Orphan Drug Act, how to be effective advocates and connect with other rare families. In addition, advocates had the opportunity to speak directly with Senator Richard Blumenthal, and staff members from Representatives Rosa DeLauro, Jhoanna Hayes, John Larson and Joe Courtney’s offices. Advocates were able to share their concerns, ask for support of the rare disease community and to protect the Orphan Drug Act.

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

In order to make meaningful change in the lives of rare disease patients and their families in the state of Connecticut, we need you! Become active with the Rare Action Network by joining and utilizing the resources available on this website to take action and create change.

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

State Information

Andrew N. Mais, Commissioner

Connecticut Insurance Department
PO Box 816
Hartford, Connecticut 06142-0816


In order to get the issues that affect your life addressed, connect with your state representative by using the tool on our website.

Click Here

Online Complaint Submission

Email for Assistance: [email protected]

State Health Insurance Consumer Assistance Program
Ted Doolittle, Healthcare Advocate

Office of the Healthcare Advocate
P.O.BOX 1543
Hartford CT,06144


Consumer Assistance Program Email:
[email protected]

Marketplace Structure: State

Access Health CT
280 Trumbull Street, 15th Floor
Hartford, CT 06103

TTY: 1-855-889-4325

Marketplace Contact: [email protected]

Marketplace Website
Enrollment Options
Plan Information
Estimate My Cost

Benefits Offered Under the Marketplace:
Essential Health Benefits
State-Required Benefits

Kaiser State Exchange Profile
State Reforum State Profile


25 Sigourney Street
Hartford, CT 06106-5033

1-800-842-1508 or 800- 842-4524

Medicaid Website
Eligibility Requirements
Medicaid Fair Hearing Rights

Children’s Health Insurance Program (CHIP)
Children’s Health Coverage Resources

Husky Health

Provides health coverage for families of children with chronic diseases or disabilities, and those with low household income.

Cancer Care

Financial assistance for children with any and all cancer diagnoses.

Free Bed Funds

Hospitals offering free or reduced cost care for patients unable to afford treatment.

Save The Kid

Non-profit offering a myriad of services to disabled and chronically ill children.

United Healthcare Children’s Foundation 

Widely applicable medical grants offered to families of children under 16 years old.

Office of Protection and Advocacy

Legal group dedicated to protecting and upholding the rights of disabled people in Connecticut – offers include support in filing claims of discrimination or mistreatment.

CT Parent Advocacy Center

Advocates offering support to families of children (birth to 26) who are disabled or chronically ill.

Show pride for rare in your state

Program Sponsors

NORD Links


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