Connecticut State Ambassador
What's Happening Now?
HOLIDAY SEASON CELEBRATION & OPEN HOUSE
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!
RARE DISEASE FORUM
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!
Tackling the Impossible: Greta Stifel Is Making History for Patients with Rare Cancers
Rare Disease Day 2019:
Sofia Sees Hope: Connecticut Rare Disease Day at the Capitol
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
Andrew N. Mais, Commissioner
Connecticut Insurance Department
PO Box 816
Hartford, Connecticut 06142-0816
Marketplace Structure: State
Access Health CT
280 Trumbull Street, 15th Floor
Hartford, CT 06103
Marketplace Contact: [email protected]
25 Sigourney Street
Hartford, CT 06106-5033
1-800-842-1508 or 800- 842-4524
Children’s Health Insurance Program (CHIP)
Children’s Health Coverage Resources
Provides health coverage for families of children with chronic diseases or disabilities, and those with low household income.
Financial assistance for children with any and all cancer diagnoses.
Hospitals offering free or reduced cost care for patients unable to afford treatment.
Non-profit offering a myriad of services to disabled and chronically ill children.
Widely applicable medical grants offered to families of children under 16 years old.
Legal group dedicated to protecting and upholding the rights of disabled people in Connecticut – offers include support in filing claims of discrimination or mistreatment.
Advocates offering support to families of children (birth to 26) who are disabled or chronically ill.