European Alpha-1 Awareness Day
@Alpha1_EPevent
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The #EU plays a key role in supporting the #Alpha1 community. Thank you @spietikainen for showcasing that #Alphas and other #raredisease patients will always have allies in the #EuropeanParliament #EUAlpha1AwarenessDay2023 @Alpha1_Global @AlphaFriend
https://t.co/Yqtpb0mi43
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We thank the @EU_Commission for their continued support of #raredisease #research, including #Alpha1. It is key to keep working together, across the whole EU, as we move towards better and more accessible treatments #EUAlpha1AwarenessDay @Alpha1_Global @AlphaFriend
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Today is European Alpha-1 Awareness Day! While much work has been done to improve conditions for rare disease patients, we can do more! Share this post on your social media pages to spread worldwide awareness for Alpha-1.
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#EUAlpha1AwarenessDay is a reminder that action is needed to support those affected by #Alpha1. Let’s come together to raise #awareness and bring #patients and #policymakers to the table so more can be done across the EU #RareDiseases @Alpha1_Global @AlphaFriend
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En el Día Europeo del Alfa-1, nos sumamos a las reclamaciones de la Asociación @Alfa1Espana ¡Por un diagnóstico temprano! #DAAT #Alpha1Awareness
🔵Diagnóstico temprano 🔵Prevención 🔵Tratamiento En el Día Europeo del 𝗗𝗲́𝗳𝗶𝗰𝗶𝘁 𝗱𝗲 𝗔𝗹𝗳𝗮-𝟭 𝗔𝗻𝘁𝗶𝘁𝗿𝗶𝗽𝘀𝗶𝗻𝗮 queremos reivindicar un abordaje más completo para un mejor día a día de los pacientes. @FEDER_ONG #DiaEuropeoAlfa1 #Alpha1AwarenessDay
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TODAY is European Alpha-1 Awareness Day where the Alpha-1 Community in #Europe comes together to raise #Alpha1Awareness and encourage more testing. Read about what life is like living with this genetic condition: https://t.co/698ddG8bpv
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Everyone deserves access to quality healthcare, and including those living with #Alpha1. Thank you, MEP @MaxovaRadka, for shining a light on the challenges faced by #Alphas and advocating for their needs #EUAlpha1AwarnessDay2023 @Alpha1_Global @AlphaFriend
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Sólo un pequeño porcentaje de los pacientes con #EPOC padecen 𝗗𝗲́𝗳𝗶𝗰𝗶𝘁 𝗱𝗲 𝗔𝗹𝗳𝗮-𝟭 𝗔𝗻𝘁𝗶𝘁𝗿𝗶𝗽𝘀𝗶𝗻𝗮, pero resulta vital diagnosticarlos para abordar mejor la enfermedad. #DiaEuropeoAlfa1 #Alpha1AwarenessDay
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25 April is the European Alpha-1 community unites to raise awareness for Alpha-1 Antitrypsin Deficiency. 3 alpha's share their experiences . https://t.co/QTgFkdU1JA
https://t.co/AExcTwMHDo
#a1uksupportgroup #alpha1awareness
#alpha1antitrypsindeficiency
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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!
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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
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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
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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.
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Tips on fundraising, finding volunteers, building your mission and objective statement and much more is available in the upcoming Alpha-1 #AdvocacyPathway!
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The self-advocacy pathway guides the readers through a series of approaches with basic education, physician communication, wellness practices. #AdvocacyPathway
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Stay up to date on everything Alpha-1 by following us on social media! If you have any questions, please send us a message on any of these platforms. We're here to help!
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Water is essential for life and it is very important to get the right amount of fluid to be healthy. Water has many functions in the body including regulating temperature https://t.co/BY5zlffrKS
#a1uksupportgroup
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The Alpha-1 #AdvocacyPathway contains five advocacy categories: Self Advocate; Social Media Advocate; Community Advocate; Policy/Legislative Advocate; Patient Organisation Leader/Advocate. Stay tuned to learn more!
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The patient organisation training section of Alpha-1 #AdvocacyPathway acts as a manual to help new organisations understand what lies ahead!
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Are you looking for tips and guidance on how to approach policy-makers, share your story and improve healthcare policy? Alpha-1 #AdvocacyPathway is the right tool for you! We are looking forward to its publication.
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