Alpha-1 Global
            
            @Alpha1_Global
Followers
                731
              Following
                794
              Media
                955
              Statuses
                2K
              Our mission is to develop a collaborative global network of Alpha-1 organisations and patients to increase awareness, detection and access to care.
              
              Coral Gables, FL.
            
            
              
              Joined March 2015
            
            
           Dr. Frank Willersinn is now providing successful examples of advocacy that @alpha1bel has taken in Belgium! To join, click here:  https://t.co/XI7klUGL6T 
          
          
                
                0
              
              
                
                0
              
              
                
                4
              
             Join us at 14:00 CET/8 AM ET for the Alpha-1 Global Webinar on Advocacy! The webinar will take the lessons learned from patient advocacy on successful efforts and present additional pathways to strive for change. To register, click here:  https://t.co/IXpkpGR637 
          
          
                
                0
              
              
                
                0
              
              
                
                3
              
             Join us on 10 May 2022 for the Alpha-1 Global Webinar on Advocacy! The webinar will take the lessons learned from patient advocacy on successful efforts and present additional pathways to strive for change. To register, click here:  https://t.co/JfL6I56AiV 
          
          
                
                0
              
              
                
                1
              
              
                
                3
              
             From June 8 - 11, 2022, we invite everyone to join us for the first ever Hybrid Alpha-1 National Conference featuring educational programs given by national experts and leaders in the Alpha-1 field. To view the #A1NC22 agenda or register, click here:  https://t.co/A7fWlDk7Re 
          
          
                
                1
              
              
                
                5
              
              
                
                4
              
             Check out the new article on #MZ #Alpha1 in @ATSBlueEditor this month. Part of a Patient Education Series it is co-authored by Gerry Finnerty an Irish Alpha to improve readability for all. #PPI #Alpha1Awareness Please like and RT. Read for free at  https://t.co/9HADcXNYmG 
          
          
                
                0
              
              
                
                2
              
              
                
                9
              
             The European Reference Networks (ERNs) can work to overcome this by sharing knowledge cross-border and improving diagnosis and treatment. Improved access to treatment and a more holistic approach can also improve patient outcomes. #Alpha1Awareness #EuropeanAlpha1AwarenessDay
          
          
                
                0
              
              
                
                3
              
              
                
                6
              
             Awareness of Alpha-1 Antitrypsin Deficiency remains low, causing many issues such as under diagnosis or often misdiagnosis. You can find more information on the condition through this infographic:  https://t.co/4YfwCci6We. 
          
          
                
                1
              
              
                
                3
              
              
                
                6
              
             Today is European Alpha-1 Awareness Day! The European Commission and national governments have done much to improve conditions for rare disease patients. We can do more! 
          
                
                1
              
              
                
                8
              
              
                
                14
              
             Hoy es el día. El día en el que pedimos: ➕ Investigación. ➕ Diagnóstico. ➕ Especialización. ➕ Concienciación. ➕ Formación del paciente. #DiaEuropeoAlfa1 #EUAlpha1AwarenessDay
            @FEDER_ONG @RarasReales @NoInvisibles
          
          
                
                0
              
              
                
                31
              
              
                
                47
              
             Thank you @iwiseler and @mmatias_ for co-hosting the Improving Care for Alpha-1 Patients webinar again this year and for recognizing the needs of the Alpha-1 community! #Alpha1Awareness
          
           Thank you to @Alpha1_Global for inviting me to co-host this interesting webinar on #Alpha1Awareness Day. Each and everyone of us has a role to play in strengthening Europe’s response to #rarediseases. 
            
                
                0
              
              
                
                2
              
              
                
                5
              
             Thank you to @Alpha1_Global for inviting me to co-host this interesting webinar on #Alpha1Awareness Day. Each and everyone of us has a role to play in strengthening Europe’s response to #rarediseases. 
          
                
                0
              
              
                
                1
              
              
                
                4
              
             Dr. Frank Willersinn and Fernanda Aspliche of Alpha-1 Plus Belgium are now discussing the successes and challenges of patient advocacy during the Improving Care for Alpha-1 Patients webinar. @alpha1bel #Alpha1Awareness
          
          
                
                0
              
              
                
                0
              
              
                
                4
              
             Prof. Joanna Chorostowska-Wynimko, Cross-Border Care Committee of ERN-Lung, is now giving her presentation on Alpha-1 and the European Reference Networks during the Improving Care for Patients Webinar. #Alpha1Awareness
          
          
                
                0
              
              
                
                0
              
              
                
                4
              
             Professor Gerry McElvaney, of Beaumont Hospital and the Royal College of Surgeons in Ireland, is now presenting on Alpha-1: treatment, diagnosis and improving quality of life, during the Improving Care for Alpha-1 Patients webinar. #Alpha1Awareness
          
          
                
                0
              
              
                
                0
              
              
                
                5
              
             Scott Santarella, President and CEO of the Alpha-1 Foundation, is presenting on Alpha-1 Global, the Foundation's global program, and efforts being made to improve the lives of Alphas globally. #Alpha1Awareness
          
          
                
                0
              
              
                
                0
              
              
                
                3
              
             The Improving Care for Alpha-1 Patients webinar has begun! We are joined today by Members of European Parliament @iwiseler and @mmatias_! The presentations will commence following a greeting from our co-hosts #Alpha1Awareness To join, register here:  https://t.co/fPNSicCPW7 
          
          
                
                0
              
              
                
                0
              
              
                
                4
              
            
            #Alpha1Awareness J’ai le plaisir de co-organiser ce webinaire sur le rôle de l’UE dans l’amélioration des soins et des traitements des patients ainsi que sur le dépistage précoce #Alpha1 👉 Rejoignez la discussion cet après-midi à 14:30 ↪️ Inscrivez-vous:
          
           Today is the Improving Care for Alpha-1 Patients webinar, co-hosted by MEPs @iwiseler and @mmatias_ - make sure to register and take part! The meeting begins at 14:30 CET #Alpha1Awareness Register here:  https://t.co/fPNSicCPW7 
            
            
                
                0
              
              
                
                1
              
              
                
                3
              
             Today is the Improving Care for Alpha-1 Patients webinar, co-hosted by MEPs @iwiseler and @mmatias_ - make sure to register and take part! The meeting begins at 14:30 CET #Alpha1Awareness Register here:  https://t.co/fPNSicCPW7 
          
          
                
                0
              
              
                
                3
              
              
                
                5
              
             Just one day to go before our online event on Improving Care for Alpha-1 Patients in Europe, co-hosted by MEPs @iwiseler and @mmatias_ - make sure to register and take part! #Alpha1 #EuropeanParliament #RareDiseases @Alpha1_Global
          
          
                
                0
              
              
                
                2
              
              
                
                2
              
             With just one week to go before our online discussion on Improving Care for Alpha-1 patients in Europe, we encourage everyone interested, to sign up!  https://t.co/KpQQEvKpQM 
            #Alpha1 #RareDiseases #EuropeanUnion
          
           In anticipation of European Alpha-1 Awareness Day (25 April), we invite the Alpha-1 community to join an online discussion on improving care for Alpha-1 patients in Europe, which will be held on 21 April, between 14:30 and 16:00 CET. 
            
                
                0
              
              
                
                3
              
              
                
                5