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For persons with primary immunodeficiency and those who love them

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Resources

Organizations

The Immune Deficiency Foundation is dedicated to improving the diagnosis, treatment and quality of life of persons with primary immune deficiencies, their families and loved ones.

Rare Action CT, the state affiliate for NORD, supports persons with rare diseases in the state, monitors legislative and state agency activity, and advocates for all persons with rare diseases in Connecticut.

The National Organization for Rare Disorders is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them

 

 

The Jeffrey Modell Foundation was established in the early 1990s in tribute to their 15-year-old son who died of infection related to his hypogammaglobulinemia. The Foundation funds research on primary immune deficiency worldwide and supports patients with PI. 


Pharmaceutical Companies

These companies manufacture and provide immunoglobulin replacement drugs.

  • Asceniv
  • Bivigam

  • Gammaplex 5%
  • Gammaplex 10%

Patient Support Programs

  • Hizentra
  • Privigen


Patient Support Programs

  • Cutaquig
  • Octagam 5%
  • Panzyga

Patient Support Programs

  • Cuvitru
  • Gammagard
  • Hyqvia

The Immune Deficiency Foundation has a list of all manufacturers’ assistance plans here.


State of Connecticut

State of Connecticut Insurance Department: Health Insurance

  • Approved plans in CT
  • Medicaid
  • Medicare (& supplement)
  • Access Health CT (the Exchange options)
  • Behavioral health
  • Medical discount plans
  • COBRA
  • Consumer resources, including rate filings

CT Zebras Connecticut Health Insurance Guide

CT Zebras has a guide to health insurance provided in the state, links to insurers’ rules for coverage, tips and a worksheet here

Save the Date!

Next CT Zebras Meeting – Virtual 
We have taken the summer off, and will let you know when our first fall meeting is. We usually meet just after dinner.

Please join us! Our meetings are open to people who are living with primary immune deficiency, are in the process of diagnosis, and the people who love them.

Click here  to sign up and we’ll let you know as soon as we have a date.

 

CT Rare Action Network (CT-RAN)              During the legislative session, advocates from many disease groups meet to discuss legislative priorities and make sure they align. Check back to learn when the meetings will start this fall. All are welcome!

 

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