Alpha-1 Europe Alliance: The voice of Alpha-1 patient organisations in Europe

The Alpha-1 Europe Alliance is a collective voice representing the national organisations of individuals living with Alpha-1 Antitrypsin Deficiency across Europe. Our mission is to advocate for access to timely diagnosis, individualised care, and holistic therapies, while raising awareness, promoting research, and empowering Alpha-1 national patient organisations. With a vision of a better and longer life for all those affected by Alpha-1 in Europe, we strive for optimal treatment, access to care, and ultimately a cure.

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Our Mission

To represent, among international stakeholders, all people living with Alpha-1 in Europe and advocate for access to timely diagnosis, best individualised care, and holistic therapies by raising awareness, promoting research, and empowering Alpha-1 national patient organisations.

Our Vision

All people living with Alpha-1 in Europe experience a better and longer life through a holistic approach to Alpha-1 with access to the best possible present and future treatment, and ultimately a cure.

Our Objectives

Guided by knowledge and personal experience, we partner with relevant stakeholders to:

Our Values

Fernanda Aspilche Ferro // President

Fernanda was diagnosed with alpha-1 antitrypsin deficiency in December 2019 at age 47, she is a ZZ alpha.  Shortly after her diagnosis, she met Frank Willersinn, president of Alpha-1 Plus in Belgium, and started to work with him as a volunteer.  In May 2020, Fernanda also joined the Board of RaDiOrg, Rare Diseases Belgium and has since then advocated to improve the lives of people living with rare diseases, in particular those living with alpha-1, in the country.  Fernanda is Spanish and has lived in Belgium for 25 years with her husband, son, and daughter. She works in the financial sector. When she is not working, Fernanda enjoys spending time with her family and friends. She likes cooking, reading and her new hobby, cycling. In 2022, Fernanda joined an initiative called Climbing For Life as a COPD representative, and together with other 7 people who live with lung diseases, they climbed by bike the Sella Ronda in the Dolomite (Italy), taking the opportunity to create awareness around alpha-1 and COPD.

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Heinz Stutzenberger, PhD // Vice-President

Heinz was born in 1952 in the city of Aachen, grew up near the Mosella River, and then moved back to Aachen where he studied to become a mechanical engineer. He worked over decades as a senior manager at a large supplier to the automotive industry with customers distributed worldwide, giving him the possibility to travel to nearly all countries in the world where cars are manufactured, until his retirement in 2021. That year he also joined Alpha1-Deutschland e.V., the German alpha-1 patient advocacy association, shortly after his wife was diagnosed with alpha-1, and after having received good guidance and orientation on how to manage the disease from the association and its advisors. He was elected the Vice-President in the spring of 2023. His key activities in this organisation include writing articles for the association’s journal, internet site, and newsletter, and research around plasma and new drugs and treatments and the related regulations. In addition, he was intensively engaged in preparing the Alpha-1 European Alliance. Heinz is living in the southwest of Germany, just between the city of Stuttgart and the Black Forest. He is a passionate bicycle rider and a choir singer, and he enjoys operating his old model railway from the 1960s together with his grandson.

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Elena Goyanes Vilar // Treasurer

Elena got in touch with Alpha-1 Spain Patient’s Association in 2008 when her husband and children were diagnosed with alpha-1. The support of the Association was essential in those first moments when the whole family was forced to manage this condition and fight against lung and liver diseases. With the aim of giving back to the alpha-1 community the support she herself had received, in 2010 she became a member of the Alpha-1 Spain Board of Directors, of which she is currently Vice-President. She combines her collaboration with Alpha-1 Spain with her work as a project and communication consultant in Santiago de Compostela. In her spare time, her great passion is the history of the Camino de Santiago as a cultural and artistic engine of medieval Europe and the origin of the city of Santiago.

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Karen O’Hara // Secretary

Karen was diagnosed with alpha-1 antitrypsin deficiency in 2005. She joined the Alpha-1 UK Support Group, a national patient charity and advocacy group in the United Kingdom, in 2007, initially in the role of Ambassador. In 2012, she joined the charity’s Board of Trustees and subsequently became the Chair of the charity in 2016. Karen is an active and passionate patient advocate, both in the UK and internationally, representing the alpha-1 patient community in many international alpha-1 and rare disease initiatives.

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Frank Willersinn, MD // Board member

Frank is a patient with alpha-1 antitrypsin deficiency. He has been on augmentation therapy since 2008. Frank was born in Germany, near Heidelberg, in the fifties. He did his medical degree at the Free University of Brussels in 1979 and then his mandatory service as a Military doctor in the German Army. Early sensitized about diseases due to indoor pollution, Frank opened up a Life Quality Shop in Brussels in the eighties:  selling natural paint made out of plants, ergonomic furniture, mattresses of horse hair, and other natural fibers;  he called the shop NATURELLEMENT, where people could find ecological products for housing.  One of his passions was natural pigments and crystals to stain paint. He also tested electric fields, the radioactivity of housing materials and analyzed the quality of the air. After losing his arm to an infection, he was diagnosed in 1997 with alpha-1 antitrypsin deficiency. In 2008, he started to get augmentation therapy for stabilizing his lungs, and then in 2013, he launched the Belgian Patient Association, Alpha-1 Plus. That same year John Walsh initiated Frank into the Alpha-1 Community. Frank was on the Board of Directors of the Alpha-1 Foundation from 2015-2021. His passion today is to travel around Europe, looking for Alphas in countries like Romania, Bulgaria, and Greece and bringing them together, out of their loneliness and reclusion. He has been a patient expert for alpha-1 at the EMA since 2015.

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Cristina Barbiero // Board member

Cristina was 31 when her husband Mario was first diagnosed with alpha-1 antitrypsin deficiency. He was 39, had advanced emphysema, and was told he only had another 10 years to live. Their son Leonardo was 3 years old, and Costanza, their second baby, was 6 months. Mario had been a heavy smoker, which added to his Z Nul phenotype, and quickly devastated his lungs. He soon entered the augmentation therapy program, and life smiled on them again. It was around that time that Pietro, their third child, was born.  After the initial shock of the diagnosis, the family reacted quickly, and it was “planning” that saved them. Without denying his condition, they faced life without letting it affect them. Mario and Cristina soon started to collaborate with the newly founded Italian Patient Association, more than 20 years ago. Over time, their projects were aimed at creating more and more knowledge about alpha-1 antitrypsin deficiency and helping people who, like them, had had their lives disrupted by the condition. Death took Mario by surprise on a cold Saturday in March 10 years ago (18 years after his first diagnosis), as a consequence of a terrible infection. Incredulous, with still so much to do, Cristina continued her collaboration with the Italian Patient Association, as a member of the Steering Committee. Given her professional background as a Business Director in an international Communication Company, she is in charge of communication and international relationships of the Italian Patient Association. Two of her three children have since become doctors.

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Thanks to our funders