Community Support

Become an Alpha-1 Ambassador

Alpha-1 Canada Ambassadors promote the mission and vision of Alpha-1 Canada.

Alpha-1 Canada Ambassadors are passionate about raising awareness about this rare disease and are willing to communicate information about the disease and their own personal journey with other patients, the general public, as well as healthcare professionals, at patient education days and healthcare conferences.

If you would like to be an Alpha-1 Canada Ambassador, please contact Alpha-1 Canada today!

 

Start an Alpha-1 Canada

Community Support Group

 

Alpha-1 Canada is always eager to find Alphas and caregivers interested in leading community-based support groups. These groups are social networks that offer support, camaraderie, opportunities for social gatherings, as well as information about programs and services available in your local area.

As a Community Support Group Organizer you can make a significant impact on other Alphas and their families.

If you would like help setting up a community support group in your area, please contact Alpha-1 Canada today!

 

Join an Alpha-1

Community Support Group

 

Alpha-1 Canada endorses a number community-based support groups across Canada that Alphas and caregivers are always invited to join.

 

Community based support groups are made up of people with common interests and experiences. People who have been through, or are going through, similar circumstances can do more than sympathize with each other; they can relate to what each one of them is going through and keep each other from feeling like they are alone. And there are additional benefits of joining a support group; they can be a great place to find practical tips and resources about living with Alpha-1.

If you are interested in learning if there is a community support group in your area, please contact us.

 

Why do people join Alpha-1

Community Support Groups?

 

In the case of rare diseases like Alpha-1, the sum of all the information group members have is much greater than any one member could possibly know. The community support group organizer and members together can share information about medical treatments, nutrition, informed healthcare providers, promising medical research, links to researchers, financial assistance, and treatment reimbursement programs, to name a few.
Research indicates that attending community-based support groups can be good for your health. Patients who participate in support groups — in addition to adhering to their medical treatments — report less anxiety and depression and actually live longer than those who do not attend any. It is speculated that having the social support of others in the group boosts the immune system by reducing anxiety and psychological stress.

 

When and how often

do community support groups meet?

 

These are decisions that each community-based support group will make for itself. Most groups meet once a month for about an hour to 1½ hours each time, in the early evening. However, something completely different may work for some groups; from online discussion groups, Facebook groups and call-in phone group meetings.

Will my confidentiality be assured?

 

In order for a community-based support group to grow and thrive, confidentiality is the most important issue any group may have to take into consideration. Organizers and participants are discouraged from discussing any information obtained about others, in conversation with the group and/or its participants.

Although good faith efforts are taken to preserve participant confidentiality, Alpha-1 Canada can make no guarantees in this regard, nor to information communicated by and between participants in any community-based support group. Community-based support group organizers will do everything in their power to maintain your confidentiality and will ask you to do the same.

E-mail notifications about

community-based groups and events

 

Some community-based support groups and events may be organized or facilitated by Alpha-1 Canada supporters, however they may not be Alpha-1 Canada events. Communications from Alpha-1 Canada about community-based support groups and local events are for informational purposes only. Alpha-1 Canada assumes no responsibility or liability of any kind regarding any advice, opinions, information, products or services that may be offered or provided as part of an independently planned community-based event.

DISCLAIMER: This website is designed to support, not replace, the relationship that exists between you and your physician. It is not the intention of this website to provide specific medical advice but rather to provide the Canadian Alpha-1 Community with information to better understand their health and their diagnosed disorder. Specific medical advice will not be provided and Alpha-1 Canada urges you to consult with a qualified physician for diagnosis and for answers to your personal questions.