About Us

What We Do

Alpha-1 Plus asbl is a not-for-profit patient-driven organization.

Missions and Goals

  • Provide support and information for patients with Alpha-1 and their families
  • Building of a communication and support network
  • Sharing of ressources and information available
  • Promote education and awareness of the disease
  • Advocate for Alpha-1 patients and community
    • In public policy issues and towards governmental and competent authorities, pharmaceutical industry, Alpha-1 and rare disease organizations, medical, scientific, and research societies and organizations, and any other relevant stakeholders ; at national, European, and international levels
    • In order to ultimately improve the quality of life ; insure access to the best care, including early detection and optimal management of the disease (notably as regards augmentation therapy) ; and foster research programs and the development of novel therapeutic approaches

Who We Are

Executive Committee

Frank Willersinn
President

Frank Willersinn, M.D., was born in Heidelberg, Germany, and lives in Brussels, Belgium, since 1972. He obtained his M.D. degree from the Université Libre de Bruxelles, Brussels, in 1979. After his military service as a doctor, he developed a strong interest for indoor pollution issues and the impact of building materials on health (concept of Building Biology; healthy and ecologically responsible building and living environment). He subsequently founded and currently managed a company focused on distribution of natural paints and wood care oils and furniture. Frank was diagnosed as Alpha in 1999 and has been treated with augmentation therapy since 2008. He co-created the first Belgian patient group in 2012, participated in the Barcelona Patient Congress in 2013, and most recently founded the Belgian patient-driven organization Alpha-1 Plus asbl. He is also member of the German patient group Alpha-1 Deutschland e.v.

Régine Van Snick
Secretary

Régine Van Snick is the backbone of the association, not even in her character. She is the “secretary” who gets all the news together, but also communicate in the medical sphere and prepares the schedules. She is not an Alpha herself, but she knows a lot about the Alpha-1 deficiency (her husband is a “ZZ” phenotype).
In her professional life she works as a gynecologist, she likes to accompany women during their pregnancy and to give a warm welcome to the babies.

Yves Nizet
Treasurer

Treated for several years as an Alpha by substitution therapy, Yves needs sometimes also some oxygen to feel more comfortable. He is the specialist of oxygen treatment in our association but also a treasurer who points out where to put the comma. He never has problems with the budget but always solutions. Fascinated by sports like alpine skiing he is always in good physical shape.

Join Us - Become a Member of Alpha-1 Plus!

Get involved!

  • Join Support, Awareness, and Advocacy Efforts
  • Help Identify Alphas 
  • Receive our Newsletter 
  • Participate to the General Assembly


Membership Fee: 14 euros per year

 

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