AlphaNet Canada

AlphaNet Canada AlphaNet Canada is dedicated to improving the lives of individuals in Canada affected by the genetic condition, alpha-1 antitrypsin deficiency (Alpha-1).

We provide complimentary disease management services to individuals diagnosed with Alpha-1. Alpha-1 Canada advocates on behalf of Canadians affected by alpha-1 antitrypsin deficiency. We also inform and educate the medical community about alpha-1 antitrypsin deficiency; and generate broad awareness about this genetic liver, lung and skin disease.

This Rare Disease Day, AlphaNet Canada was proud to attend the M.A.G.I.C. (Metabolics and Genetics in Canada) Rare Disea...
02/28/2026

This Rare Disease Day, AlphaNet Canada was proud to attend the M.A.G.I.C. (Metabolics and Genetics in Canada) Rare Disease Day 2026, themed "Every Story Matters: Rare Voices in Focus". AlphaNet Canada is excited to partner with M.A.G.I.C. in 2026 to launch a national AATD genetic testing pilot project. Interested in learning more about AATD genetic testing and family screening? Please make sure you are enrolled with us to stay up to date on this and many other exciting initiatives we have planned throughout the year. To enrol, email: infoca@alphanetcanada.ca

On Rare Disease Day, we honor the strength and resilience of all individuals affected by rare conditions, including thos...
02/28/2026

On Rare Disease Day, we honor the strength and resilience of all individuals affected by rare conditions, including those with alpha-1 antitrypsin deficiency (Alpha-1). Today and every day, AlphaNet Canada remains committed to providing resources, education, and support for individuals with Alpha-1 as they navigate their unique healthcare journeys.

Oxygen therapy can help you live:A longer life: Oxygen therapy can reverse the negative effects of low blood oxygen and ...
02/24/2026

Oxygen therapy can help you live:

A longer life: Oxygen therapy can reverse the negative effects of low blood oxygen and improve survival rates. Research studies on people with severe COPD show that more daily hours of oxygen therapy result in more positive health effects. In one study, long-term oxygen therapy increased life span by as much as 6-7 years.

A better life: You don’t just want to live longer. You want to live as well as you can, for as long as you can. Oxygen therapy helps you do that, by letting you stay active with less shortness of breath. People who use supplemental oxygen can exercise longer and harder, which leads to greater overall fitness.

To learn more, please visit bfrg.alphanet.org to access the Big Fat Reference Guide (BFRG).

Nutrients from food are processed, stored, and distributed to other parts of the body via the liver. Your liver also pro...
02/09/2026

Nutrients from food are processed, stored, and distributed to other parts of the body via the liver. Your liver also produces a substance called bile, which is stored in your gallbladder. When you eat, the bile drains into your intestine through the bile duct. It mixes with food to help with fat digestion and nutrient absorption.

To learn more, please visit bfrg.alphanet.org to access the Big Fat Reference Guide (BFRG).

02/06/2026

Alpha-1 can hide in plain sight as COPD.

Marc was diagnosed at 52, after years of symptoms that never quite matched his risk factors. He had only light, remote smoking exposure, yet significant lung damage. The missing piece was Alpha-1 antitrypsin deficiency, a genetic condition where too little protective protein reaches the lungs.

Practical takeaways for clinicians and educators:

- Think beyond smoking when severity is out of proportion
- COPD is a pattern, not a single cause
- Order a serum Alpha-1 level once
- Explain clearly: smoking did not cause Alpha-1, it can amplify damage
- Introduce family testing with consent and confidentiality

Mini example: If a patient’s decline feels “too fast” for their exposure history, treat that mismatch as a clinical clue, not a mystery.

Where do you see Alpha-1 missed most often in real-world care?

Learn more about Alpha-1 in COPD in our latest article: https://chroniclungdiseases.com/en/news/alpha-1-diagnosis-early-detection/

02/04/2026

La MPOC qui « ne correspond pas » est là où le diagnostic devient intéressant.

Un patient diagnostiqué à 41 ans, n'ayant jamais fumé, présentant des symptômes persistants malgré l'utilisation d'inhalateurs : ce profil devrait déclencher un dépistage de l'alpha-1 (par une simple analyse de sang sérique).

Conseils pratiques que vous pouvez mettre en œuvre dès cette semaine :

- Ajouter le dépistage du déficit en alpha-1-antitrypsine au moins une fois dans chaque bilan de la MPOC, y compris au moment du diagnostic initial.
- Soyez attentif à l'apparition précoce, au déclin rapide et aux exacerbations fréquentes.
- N'oubliez pas que le tabagisme n'exclut pas l'alpha-1.
- Si le taux est faible, confirmez (génotype/phénotype) et orientez le patient vers un spécialiste.
- Traitez les discussions sur les tests familiaux avec confidentialité et en laissant le choix au patient.

Mini exemple : si la spirométrie montre une obstruction mais que les antécédents d'exposition semblent « disproportionné » pour justifier la gravité, effectuez le test sérique en plus des analyses de routine. Il s'agit d'un dépistage rapide qui modifiera le parcours de soins et la discussion avec la famille.

Effectuez-vous systématiquement un test de dépistage de l'alpha-1 dans les cas de MPOC, ou uniquement lorsque le cas semble inhabituel ?

Pour en savoir plus sur l'alpha-1 dans la MPOC, consultez notre dernier article : https://chroniclungdiseases.com/fr/nouvelles/test-alpha-1-mpoc/

02/04/2026

COPD that “doesn’t fit” is where diagnosis gets interesting.

A patient diagnosed at 41, never-smoker, persistent symptoms despite inhalers: that pattern should trigger Alpha-1 testing (through a simple serum blood test).

Practical takeaways you can use this week:

- Add Alpha-1 antitrypsin deficiency testing at least once in every COPD workup, including at the time of initial diagnosis.
- Watch for early onset, rapid decline, frequent exacerbations
- Remember smoking does not exclude Alpha-1
- If the level is low, confirm (genotype/phenotype) and refer
- Handle family testing conversations with confidentiality and choice

Mini example: If spirometry shows obstruction but the exposure history feels disproportionate for the severity, run the serum test alongside routine labs. It is a fast screen that will change the care pathway and the family discussion.

Are you routinely testing for Alpha-1 in COPD, or only when the case feels unusual?

Learn more about Alpha-1 in COPD in our latest article: https://chroniclungdiseases.com/en/news/alpha-1-testing-copd/

Your liver makes large quantities of AAT protein and releases it into the blood. Although other organs can make some Alp...
02/04/2026

Your liver makes large quantities of AAT protein and releases it into the blood. Although other organs can make some Alpha-1 protein, the liver is estimated to make more than 90% of the AAT protein for the body. People who carry two abnormal genes for Alpha-1 produce an abnormal AAT protein. Though there are many abnormal genes that can cause liver disease, the "Z" gene is the most common abnormal gene responsible for liver disease. The “M” gene isn’t abnormal.

To learn more, please visit bfrg.alphanet.org to access the Big Fat Reference Guide (BFRG).

02/03/2026

Wave Life Sciences has regained full rights to WVE-006, a new treatment in development that aims to address both lung and liver complications of Alpha-1 Antitrypsin Deficiency (AATD). Wave plans to meet with the FDA this year to explore ways to get this potential therapy to patients faster. More clinical trial data is expected in 2026.

To read the full press release, click here: https://ir.wavelifesciences.com/news-releases/news-release-details/wave-life-sciences-announces-plans-accelerate-regulatory

As a reminder, we recently hosted a webinar with Dr. Ken Chapman where he provided an overview of the Wave trial and its significance for the Alpha-1 community. You can watch the full webinar on AlphaNet Canada's Portal: https://survey.alphanetcanada.ca/s/story/a2SPV0000022c9h2AA/cms261.

If you don't currently have access to the AlphaNet Canada portal, please email infoca@alphanetcanada.ca.

Join AlphaNet Canada for an online information session tomorrow, January 28, 2026, from 7 to 8 p.m. EST to learn about l...
01/27/2026

Join AlphaNet Canada for an online information session tomorrow, January 28, 2026, from 7 to 8 p.m. EST to learn about living with Alpha-1 Antitrypsin Deficiency-Associated Liver Disease featuring Dr. Hin-Hin Ko, Clinical Professor at the University of British Columbia and a hepatologist at St. Paul’s Hospital in Vancouver.

To register for this session, visit: https://us02web.zoom.us/.../register/jFc__Ai_RfKsxBfCMw7LAw

Join AlphaNet Canada for an online information session on January 28, 2026, from 7 to 8 p.m. EST to learn about living w...
01/26/2026

Join AlphaNet Canada for an online information session on January 28, 2026, from 7 to 8 p.m. EST to learn about living with Alpha-1 Antitrypsin Deficiency-Associated Liver Disease.

Dr. Hin-Hin Ko, Clinical Professor at the University of British Columbia and a hepatologist at St. Paul’s Hospital in Vancouver, will provide an overview of how Alpha-1 can affect the liver, share insights into a current clinical trial aimed at reducing liver scarring, and offer practical guidance and hope for slowing or reversing liver damage.

There will also be time for questions, allowing attendees to receive expert guidance on living with AATD liver disease.

To register for this session, visit: https://us02web.zoom.us/meeting/register/jFc__Ai_RfKsxBfCMw7LAw

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Our Story

Alpha-1 Canada provides information, education and support to Canadians affected by alpha-1 antitrypsin deficiency. We also inform and educate the medical community about alpha-1 antitrypsin deficiency; and generate broad awareness about this genetic liver, lung and skin disease.