news

We are not alone! We stay together!

Alpha-1 Global Congress, Croatia 3-6 April. The young patient's voice with our HappyAir Ambassador Arran Strong from Lovexair was a hit.

 

Global Alpha-1 Congress, Croatia April 3-6.

The voice of the young patient with our ambassador HappyAir Arran Strong from Lovexair was a success.

How good is it for young people to start talking about how they continue to live their lives and build their dreams, even when they have a rare disease that affects their lungs, liver and can cause other systemic conditions?

Arran and Martina , the daughter of Carlos Cambón from the Fundación Alfa-1 Argentina, comfortably talked about their experience with the photographer richard lovrich and Alpha, the master of ceremonies, affected by the lung.

The message was clear, don't give up, stand up and tell your story, whether asthma, COPD or other condition. Be sure to get tested, so you really know what your issues are, and then you can step forward with more confidence, taking care of your own lifestyle.

Alpha-1 Foundation USA supported the Scientific Conference and the 4th Global Patient Congress . Its mission to empower a global community of patients and strengthen its research program with leading experts is clear for the future.

Today's patients can participate in new ways of sharing data with trusted custodians and building relationships with researchers, clinicians, and experts on global networks.

This is vital to developing our understanding of the disease, improving clinical outcomes with self-management through the use of digital resources and health advice, as well as creating new registries that can contribute to future research needs and recruit well-adjusted patients. reported in the studies. Connecting, even in countries where there are still only a few detected alphas with scant resources and no access to therapies, such as AAT augmentation therapy for lung disease.

We are not alone, our digital network allows us to stay empowered and access the resources we need, to build a growing number of diagnosed, educated and empowered advocates who can campaign to improve their access to appropriate care and treatment.