Patients and Physicians United to Celebrate the First European Alpha-1 Awareness Day
Brussels, 25th of April 2018 – Today, patient representatives, specialist healthcare professionals and experts gathered in Brussels to discuss Alpha-1 Antitrypsin Deficiency care and greater collaboration at EU and national levels, in the context of the first European Alpha-1 Awareness Day.
Alpha-1 Antitrypsin Deficiency (AATD) is a genetic inherited condition occurring in people with a deficiency in the Alpha-1 antitrypsin protein (AAT) in the blood, which can cause liver disease and lung disease. While there is currently no cure, treatments are available to better manage the disease and slow down the progression of the organs damage, such as plasma derived therapy for Alpha-1 lung and skin affected patients.
In order to raise understanding of this rare disease, largely underdiagnosed and receiving limited political attention, the first European Alpha-1 Awareness Day “European health made national” was launched in the European Parliament on the 24th of April, under the auspices of the Alpha-1 Global patient organisation and Polish MEP Marek Plura.
On this occasion, specialists and patient representatives met today in the European capital during a roundtable discussion initiated by CSL Behring. Participants had the opportunity to hear and exchange on best practices in early testing and care of AATD, including on lifestyle changes and access to available treatments; and further discussed how to increase awareness and education of the disease amongst general practitioners and specialists.
Speaking at the event, Prof Robert Stockley, University Hospital Birmingham, stressed the importance of centres of excellence and multidisciplinary care in the management of this complex disease, as well as of early diagnosis and treatment before the patient starts experiencing health issues.
The meeting was also the occasion to talk about the recent creation of the European Reference Networks for rare diseases (ERNs), which illustrate a promising example of European wide cooperation, through virtual networks, helping professionals and centres of expertise in different countries to share knowledge, expertise and resources on rare and complex conditions, such as AATD, while involving patients in the process. The ERN Lung and ERN Rare Liver will play an important role going forward in the research and understanding of the disease so that patients can have access to accurate diagnosis and quality treatment in AATD. Participants agreed on the need to promote the work of the ERNs to healthcare providers and patients across Europe and to enhance further synergies between ERNs on common areas of work to bring concrete benefits to the many thousands of Alpha-1 patients.
 Alpha-1 European Expert Group Recommendations. 2017. http://www.alpha-1global.org/wp-content/uploads/2017/03/RPP-E-01-17_Alpha-1-Booklet_14-03-17.pdf
Source: CSL Behring