In Ireland, Oliver J. McElvaney et al studied the effects of sudden cessation of Alpha1-Antitrypsin replacement therapy. In September 2017, the Irish health authorities decided to stop public funding for treatment of Alpha-1 patients. By mid-December 2017, two of the 19 patients died from respiratory failure. The outcomes of this study were presented by Alpha-1... Read More
It’s almost Alpha-1 Awareness Day. This day is meant to raise awareness for those with alpha-1 antitrypsin deficiency. Too many cases remain undiagnosed, and therefore untreated. Help us spread the word and save the date: 25 April 2020.
PLUS, the Platform of Plasma Protein Users, sends an open letter to European Member States on the need for a continued access to plasma-derived medicinal products and for strengthening the collection of blood and plasma. PLUS is a coalition of organisations representing patients with rare plasma-related disorders whose health and lives rely on a stable... Read More
European Alpha-1 Awareness Day 2020 This year, the annual European Alpha-1 Awareness Day takes place on 25 April. It is dedicated to raising awareness of alpha-1 antitrypsin deficiency, a rare genetic condition. The ultimate objective of this awareness day is to improve early diagnosis, treatment and knowledge of the disease. Due to the COVID-19-situation, many... Read More
In an open letter, EURORDIS-Rare Diseases Europe implores policy makers and authorities to take action to protect people living with a rare disease from becoming even more vulnerable during this crisis in line with the recommendations set out further below. Rare diseases, often chronic, highly complex, progressive and severely disabling, generate specific care needs. The... Read More
Congratulations to Pavel Strnad, M.D., Noel G. McElvaney, and David A. Lomas, Sc.D. on co-authoring a review article published today in the New England Medical Journal on Alpha-1 Antitrypsin Deficiency! #alpha1 Click here for the article.
At a Policy Event organised at the European Parliament in Brussels last month, EURORDIS re-launched the Network of Parliamentary Advocates for Rare Diseases, a group of European and national members of parliament advocating to improve the lives of the 30 million people living with a rare disease in Europe. Click here to read more.
Alpha-1 Plus has participated to the Rare Disease Day 2015! On February 24, 2015, Frank Willersinn, President of Alpha-1 Plus, attended the Policy Event and Gala Dinner organized by EURORDIS for the Rare Disease Day 2015, at Brussels. The Rare Disease Day is an annual awareness event coordinated by EURORDIS. Read more about the Rare Disease... Read More
Alpha-1 Plus has joined EURORDIS as Associate Member! EURORDIS is a non-governmental patient-driven alliance of patient organizations, representing 667 rare disease groups and associations, in 61 countries, covering 4000 diseases. EURORDIS works to build a strong pan-european community of patient organizations and people living with a rare disease, to be their voice at the European level, and – directly or... Read More
Alpha-1 Global Patient Congress April 9-11, 2015 – Barga, Italy Registration is open ! More Information