HISTORY AND OVERVIEW
Alphas worldwide experience many of the same problems:
- Little to no awareness of their condition.
- Late diagnosis, while health deteriorates.
- Physicians unfamiliar with Alpha-1 care standards.
- Limited or no access to augmentation therapy; the only specific therapy for Alpha-1.
As a result, quality of life suffers greatly.
The challenges of obtaining the appropriate medical care vary by country. Many countries have already faced these hurdles and made progress in the areas of awareness, detection, health management, access to therapy and reimbursement. While countries have different governance structures and healthcare systems that demand a unique approach to advocacy, much can be learned from the experience of Alpha-1 communities that have faced these same challenges and won some hard fought battles.
ALPHA-1 GLOBAL INITIATIVE
During the 4th International Alpha-1 Patient Congress in Barcelona, Spain in April 2013, Alpha-1 leadership from 20 countries came together to share their experiences. Discussions regarding needs, desires, successes and failures produced a united resolve to stay connected as a collaborative global patient community.
The Alpha-1 Foundation offered its leadership and resources to assist in building a communications platform for the global Alpha-1 community with the goal to connect Alpha-1 organisations and individuals to share ideas, strategies and tools on three main topics: awareness, detection, and access to care. The start-up program was originally referred to as the “Alpha-1 Global Initiative,” but its name was permanently changed to “Alpha-1 Global” on 1 June, 2014.
2017-2020 Alpha-1 Global Strategic Plan
Alpha-1 Global Staff
SENIOR DIRECTOR OF RESEARCH PROGRAMS – RANDEL PLANT: Randel Plant is the Senior Director of Research Programs of the Alpha-1 Foundation and he is managing the Alpha-1 Global program. He began working for the Alpha-1 Foundation in 2003 as the director of its grants and detection programs. Randel is a Canadian and US citizen, and holds a BA in Economics. Randel has an extensive background in project management, research, and contracts. He is fluent in French and Spanish, has a strong interest in strategic networking and coalition-building, and enjoys bringing together people with diverse strengths and cultural backgrounds in a dynamic, pragmatic environment. In addition to continuing to build a cohesive network of Alpha-1 stakeholders, Randel works closely with the Alpha-1 Global Steering Committee on strategies to help mobilise Alpha-1 communities around the world.
COMMUNICATIONS & GLOBAL COORDINATOR – GIANCARLO PINEIRO: Giancarlo Pineiro has recently accepted a position with the Alpha-1 Foundation as Communications & Global Coordinator, where he will work on objectives at the national and international level. Prior to his arrival at the Foundation, he enjoyed nearly two years working with AlphaNet, Inc. as Communications Assistant, where he was first introduced to the Alpha-1 community. Giancarlo was primarily involved in assisting with internal and external communications objectives and worked closely with AlphaNet’s nationwide network of AlphaNet coordinators to ensure proper facilitation of educational materials to AlphaNet’s subscriber base. He was also responsible for disseminating AlphaNet scholarships to assist Alphas and their families attend the Alpha-1 National Conference. His experience working with AlphaNet, as well as attending the Alpha-1 National Conference, has given Giancarlo a deeper connection to the Alpha-1 community and the Foundation’s mission of finding a cure and improving the lives of people affected by Alpha-1.
During his tenure with AlphaNet, Giancarlo enrolled in graduate school at Florida International University, where he recently completed his master’s degree in Global Strategic Communications with a certificate in Conflict Resolution and Consensus Building. Giancarlo now looks to apply his skill set to achieving the goals set forth by the Foundation and continuing to serve the Alpha-1 community.
Alpha-1 Global Directory