Alpha-1 Resources

Educational Resources


Alpha-1 Antitrypsin Deficiency

 

Genetic Alliance

  • The Genetic Alliance is an international genetics coalition comprised of millions of individuals with genetic conditions and more than 600 advocacy, research and health care organizations representing them.

 

National Organization for Rare Disorders

  • Since 1983, working toward the prevention, treatment, and cure of rare "orphan" diseases.

 


 

Alpha-1 Organizations

 


 Alpha-1 Chat Rooms

 

Lung TX Chat Room

 

The Lung Club

 


 

Community Links

 

Alpha-1 International Support Mailing List


Alpha-1 Lungs & Life Mailing List

  • A social, support and information resource for people with lung disease caused by Alpha-1 Antitrypsin Deficiency. Anyone with, or just interested in, Alpha-1 is welcome to join. To join, send an e-mail to: Alpha1_Lungs_and_Life-subscribe@yahoogroups.com


Alpha Liver E-Group

  • Help, advice and support for people and families affected by (or anyone who has an interest in) Alpha-1 Antitrypsin Deficiency Liver Disease. To join, send an e-mail to: ALPHA-LIVER-subscribe@egroups.com


Alpha Liver List

 

 


 Advocacy for Patients with Chronic Illness


  • Caring Voice Coalition empowers patients who live with a life threatening chronic disease through comprehensive outreach programs and services aimed at financial, emotional and educational support. With a steadfast dedication to the organization’s set of core values, their knowledgeable, caring staff maintains a solid reputation as a dependable, responsive organization with a unique approach to improving the lives of our patients.

1 (888) 267-1440 or http://www.caringvoice.org/

 

  • Families USA; The Voice for Healthcare Consumers is a nonprofit, non-partisan organization dedicated to the achievement of high-quality, affordable health and long-term care for all Americans since 1982. Families USA has worked to promote high-quality, affordable health care for all Americans. Their program locator can assist in locating other types of consumer assistance.

Website only: http://www.familiesusa.org/resources/program-locator/

 

  • Healthcare.gov is a federal government website managed by the U.S. Department of Health & Human Services with the initiative to educate Americans about the Affordable Care Act that was signed into law two years ago on March 23, 2010. The website has a tool to find individual state’s Consumer Assistance Programs, where they have been established and other help sources with health insurance problems.

Website only: http://www.healthcare.gov

 

  • Patient Advocate Foundation provides effective mediation and arbitration services to patients to remove obstacles to healthcare including medical debt crisis, insurance access issues and employment issues for patients with chronic, debilitating and life-threatening illnesses. This service pairs the patient with a case manager who will assist the patient with their needs.

1 (800) 532-5274 or http://www.patientadvocate.org/

 

  • Advocacy for Patients with Chronic Illness assists patients with free information, advice and advocacy services in areas including but not limited to the following: getting your own medical records; health insurance; private disability insurance coverage; Social Security Disability Income; your rights under the Americans with Disabilities Act; rights under the Family and Medical Leave Act and how to ensure that schools accommodate students with chronic illnesses.                                  

 1 (860) 674-1370 or http://advocacyforpatients.org/

 

  • Your therapy provider or the manufacture most likely has a division or third party group that is designed to assist you with insurance issues and appeals. Each state has a bureau that could be contacted for assistance. They would have names such as: Insurance Commission office; Department of Insurance; Health Insurance Division Consumer Service; Department of Insurance Consumer Services; Office of Insurance Regulation, etc.

 


 

Additional prescription assistance programs:


https://www.rxhope.com/ or call toll free: 1 (877) 267-0517

  • Includes information and application forms for Patient Assistance Programs

 

http://www.pparx.org/ or call toll free: 1 (888) 477-2669

  • The Partnership for Prescription Assistance helps qualifying patients without prescription drug coverage get the medicines they need through the program that is right for them.

 

http://www.patientmedicationassistance.com or call toll free: 1 (866) 353-9377

  • Patient Medication Assistance Inc. helps individuals receive free medications through Patient Assistance programs.

 

http://www.freemedicinefoundation.com/ or call: 1 (573) 996-3333

  • Assistance to pay for brand name FDA approved medications regardless of age or employment.

 

http://www.freemedicineprogram.org/

  • Free Medicine Program that helps patient in obtaining prescription drugs and medications free of charge.