Are you an Alpha too?  Join our Facebook group!   A1ADSupport

Contacts

If you are an Alpha, or a family member, looking for a community of supportive Alphas, please join our Facebook group: https://www.facebook.com/groups/A1ADSupport/

You can also follow us on our public Facebook page: https://www.facebook.com/A1ADSupport/ (If you need to contact us, this is the best place to do it. Message us here.)

Alpha-1 Gear

  • A1ADSupport Store – All proceeds are sent to organizations like the Alpha-1 Foundation who support research and education. Learn more here.

Testing

  • Alpha-1 Coded Testing – Free, confidential testing through the Alpha-1 Foundation, only available to those in the United States.
  • The Grifols AlphaID™ at Home – Tests for the 14 most prevalent mutations associated with alpha-1, including the S, Z, F, and I alleles, as well as rare and null alleles (Mprocida, Mmalton, Siiyama, Q0granitefalls, Q0west, Q0bellingham, Plowell, Q0mattawa, Q0clayton and Mheerlen). The test is available and free for Americans.

    Canadians can sign up here: https://alpha1canada.ca/genetic-facts/ (Patients with a family history of alpha-1 antitrypsin deficiency or low alpha-1 serum levels can contact the Alpha-1 Canadian Registry at https://alpha1canadianregistry.com/contact/ or at 1-800-352-8186, to request a testing kit. An Alpha-1 Canadian Registry Coordinator can discuss optional confidential testing and arrange to have a test kit sent directly to a patient’s home.)

Genetic Counseling Program

Research

  • Research Registry – The Alpha-1 Research Registry is a confidential database made up of individuals diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1) and individuals identified as Alpha-1 carriers. The Registry was established to facilitate research initiatives and promote the development of improved treatments and a cure for Alpha-1.
  • Alpha-1 Canadian Registry – The Alpha-1 Canadian Registry is a confidential database where Canadian researchers store information shared with them by patients with alpha-1 antitrypsin deficiency. Gathering this information in one place allows researchers to learn more about the disease and how it affects patients.

Specialized Groups

  • Alphas with Rare Genotypes – This group shares information, resources, and experience for those whose genotype is something other than ZZ, MZ, SZ, or MS.
  • Alpha-1 Kids – Parent Support Facebook group – Are you a parent of an Alpha Kid? Come join the group to get specialized information and support with a focus on accuracy and easy-to-understand language that can really help on the Alpha-1 journey.
  • Alpha-1 UK Support Group – If you live in the UK, this group is a fabulous resource for information on finding a specialist, understanding the medical system, and figuring out financial concerns.
  • Alpha-1 Support Group Canada – A small group of Canadian Alphas with experience finding great respirologists, applying for augmentation therapy, etc.

Specialists

Patient Assistance Programs