Over ons

Wat We Doen

Alpha-1 België is patiënt-gedreven organisatie zonder winstoogmerk

Opdrachten en doelen

  • Patiënten met Alpha-1 en hun families ondersteunen en informatie geven
  • Opzetten van een communicatie- en ondersteunend netwerk
  • Delen van middelen en informatie
  • De bewustmaking over en het inzicht in de ziekte bevorderen
  • Alpha-1 patiënten en hun gemeenschap onder de aandacht brengen en verdedigen
    • Bij openbare beleidsrichtlijnen bij de overheid en de bevoegde autoriteiten, de farmaceutische industrie, Alpha-1 en zeldzame ziekte organisaties, medische, wetenschappelijke, onderzoek verenigingen en organisaties, en andere relevante belanghebbenden; op nationaal, Europees en internationaal niveau.
    • Om uiteindelijk de kwaliteit van het leven te verbeteren, de toegang te verzekeren tot de beste zorg, met inbegrip van vroege opsporing en een optimaal beheer van de ziekte (met name wat betreft substitutie therapie), en het bevorderen van onderzoeksprogramma’s en de ontwikkeling van nieuwe therapeutische benaderingen

Wie we zijn

Uitvoerend Comité

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.

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