Welcome to Alpha1Canada.ca
Ask the Alpha Docs Patient Education Day, June 1, 2013, Edmonton, Alberta
Click here for Details and Registration - 2013 Patient Education Day - Edmonton, AB
Listen to Board Member, David McKinney, discuss the Ontario Government's refusal to cover treatment for lung-affected Alphas.
Alpha-1 Canada’s mission is to provide information, education and support to Canadians affected by alpha-1 antitrypsin deficiency; inform and educate the medical community about alpha-1 antitrypsin deficiency; and generate broad awareness about this genetic liver, lung and skin disease.
What is Alpha-1 antitrypsin deficiency?
Alpha-1 antitrypsin deficiency which is also known as alpha-1, A1AD and AATD, is a rare inherited genetic disorder that can affect the liver, lungs and skin.
Read about Mark Pettigrew's double lung transplant journey here.
Read about wait times for healthcare in Canada in the 2012 report card by the Wait Time Alliance. See how your province fairs.
NEW Clinical trials are beginning in Western and Central Canada
To see if you qualify to be involved in this research, click below for details.
WESTERN CANADA CENTRAL CANADA
Support Groups across Canada
Alpha-1 Canada has support groups across Canada and we need you to participate. We are looking for volunteer support group leaders and support group members in all provinces. There are already support groups in Western Canada, eastern Canada and Ontario.
Setting up and operating support groups in Canada for people with rare diseases like Alpha-1 has always been a challenge. In the case of more common diseases like cancer or diabetes for example, the pool of potential members is large and creating a group in a town or even part of a town that can meet regularly and in person is a very real possibility.
The same cannot be said in the case of Alpha-1. Any given Alpha may be the only Alpha in town or the only Alpha for miles.
We have found the solution to this quandary. Thanks to a generous grant from the Ontario Trillium Foundation Alpha-1 Canada has developed an on-line model for support groups using Internet tools to bridge those miles and make support group attendance possible and easy for the majority of people with Alpha-1, their caregivers and parents.
We have a support group leader manual and resource guide and training modules for volunteer support group leaders. If you are already a whiz with video chat this opportunity was made for you. And if you don’t know anything about video chat here’s your chance to learn and become a whiz.
All 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 are going through and keep each other from feeling like they are alone.
However, many people are unaware of the additional benefits of joining a support group; support groups can be a great place to find practical tips and resources.
This is especially true in the case of rare diseases like Alpha-1 where the sum of all the information the members know is much greater than any one member could possibly know. The support group leader and members together share information about, medical treatments, nutrition, informed healthcare providers, promising medical research, links to researchers, financial assistance, travailing with oxygen and drug and treatment reimbursement to name a few.
In fact, research indicates that attending 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. It is speculated that having the social support of others in the group boosts the immune system by reducing anxiety and psychological stress.
The problem, as we said, for people affected by a rare disease is that there are not others affected by the same disease close by to meet with. That is where the internet comes in to play.
Our on-line support groups use the significant power of the internet to bridge the miles and bring people together. Together, all the members can feel that the rest of the group is right there in their home with them.
Using webcams, headphones, an internet connection and their computers, group members can ‘get together,’ see and hear each other and meet other Alphas in the comfort of their own home!
If you are interested in being a leader or member of one of these on-line groups please contact us right away (email@example.com or 1-888-669-4583. Or see our website here.
We would like to grow this program to a point where we have at least one group in each province although some provinces may need more and other smaller provinces like PEI may need to be combined together. We would also like to hear from people who would like to lead or be members of support groups for caregivers and for parents of children affected by Alpha-1.
At the present time the manual and training materials are only available in English, however, we would welcome the opportunity to train leaders who are bilingual who could then lead French language support groups.
We have also shared our manual and training materials with other rare disease groups.
Please take this opportunity to support yourself and others and be a part of making a difference not only in your own life and the lives of other Alphas, but also in the lives of all rare disease sufferers. Contact us today (firstname.lastname@example.org or 1-888-669-4583.