Alpha-1 Global Congress, Croatia 3-6 April.
The young patient’s voice with our HappyAir Ambassador Arran Strong from Lovexair was a hit.
How great it is for young people to begin to speak out about how they continue to live their lives and build their dreams, even when they have a rare disease which affects lung, liver and can cause other systemic conditions?
Arran and Martina, Carlos Cambón’s daughter from the Alfa-1 Foundation Argentina, chatted comfortably about their experience with Richard Lovrich photographer and lung-affected Alpha, the master of ceremonies!
The message was clear, don’t give up, stand up and tell your story whether it be asthma, COPD or another condition. Make sure you are 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 & 4th Patients’ Global Congress. Its mission in motivating a global patient community and strengthening its research program with leading experts, is clear for the future.
Patients today, can engage in new ways to share data with trusted custodians and build relationships with researchers, clinicians and experts across global networks.
This is vital to developing our understanding of disease, improve clinical outcomes with self-care by using digital resources and health coaching, as well as building new registries which can contribute to research needs for the future and recruit well-informed patients in studies. Connecting, even across 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 enables us to stay empowered and access those resources we need, to build a growing number of diagnosed, educated & empowered advocates who can campaign to improve their access to appropriate care and treatment.