Alpha-1 Kids

Take survey
The Alpha-1 Association is conducting a survey for mothers and fathers of children diagnosed with Alpha-1 to learn about the types of information or help you received when you child was diagnosed and to find out if there is information or resources you need. Please take it today to help us better develop programs and services for you.

The Alpha-1 Kids program is dedicated to providing support, education & information for parents and families of children affected by Alpha-1.

 

Support

 

A Patient Information and Resource Referral Line assists parents in obtaining information, locating resources and expert physicians on Alpha-1 throughout the nation. Telephone: 1-877-346-3212

 

A Peer Guide Program links parents with other parents as a source of information and support to families hearing the diagnosis for the first time to those who have been coping with the deficiency for years.

 

A Genetic Counseling Program is a resource for parents. A certified genetic counselor can answer all questions regarding Alpha-1, its genetic implications and considerations for additional family testing.

Telephone: 1-800-785-3177

 

 

An Alpha-1 Kids Virtual Support Group meets on a bi-monthly basis and covers specialized topics for parents. The recordings of these calls are available on our website. Click here to access recordings of previous telecalls.

 

Education

 

Robert Seigman Memorial Scholarship Fund

Travel scholarships are provided to newly diagnosed and returning families to attend the Alpha-1 Association's Annual National Education Conference in June of each year through the Robert Seigman Memorial Scholarship Fund. A Kids and a Teen room provide the opportunity for parents to attend the conference while their children are enjoying activities with other Alpha children and teens. Activities are planned for both groups and staffed by parents. To apply for a scholarship, please email Cathy Horsak at chorsak@alpha1.org.

 

Alpha-1 Publications

Educational materials are available for children from the pre-reading level through adolescents. Click here to see the publications that are available.

 

Information & Resources

For a listing of resources for parents, please click here.

 

E-Education

Presentations made at Alpha-1 educational events are available to be viewed online here.

 

Research 

To view information and resources about research, click here.

 

Mailing List

To join the Alpha-1 Kids mailing list, please click here.

 

Alpha-1 Kids

Telephone: 1-877-346-3212

E-mail: alpha-1kids@alpha1.org