On the 28th of February 2021, people in more than 100 countries celebrate the 14th Rare Disease Day, a day dedicated to raising awareness about rare diseases and their impact on the lives of people affected by these diseases. This year, the campaign led by ALAN and its partners is focused on the illumination of flagship buildings as a symbol of community and solidarity.
The official launch of the “Light It Up” campaign took place on the 24th of February 2021 at 19:00 with the illumination of water tower at the Ban de Gasperich, by Luxembourg’s Health Minister, Ms. Paulette Lenert, Luxembourg City alderman, Mr. Patrick Goldschmidt and ALAN president, Shirley Feider-Rohen.
In addition to the water tower, multiple other flagship buildings in Luxembourg and around the world will be illuminated in the colours of the Rare Disease Day (blue, pink, green, purple) for the last week of February 2021, including:
- City of Esch-sur-Alzette: the Town Hall and the Belval blast furnaces
- Ettelbruck: the CAPE – Center des Arts Pluriels Ettelbruck
- Mamer: the Mamer Schlass and the Maison Citoyenne
- Wiltz: the Wiltz Castle
- Schengen: the Columns of Nations
- The Centre Hospitalier de Luxembourg
- The Centre Hospitalier Emile Mayrisch
- The Rehazenter
According to alderman Patrick Goldschmidt: “Rare diseases, like any serious diseases, not only affect those living with the disease but also weigh heavily on their family and loved ones. All too often, these people face isolation and misunderstanding. We believe that it is our responsibility to provide support to associations whose mission consists in raising awareness and supporting patients and their families. The ” Semaines de sensibilisation aux besoins spécifiques ” of the City of Luxembourg have been the flagship event of this commitment for many years. Through its Service Intégration et besoins spécifiques, the City is continuing its efforts to develop and improve its services for citizens with specific needs. We commend ALAN for the tremendous work they accomplish every day to support people affected by a rare disease. “
The illumination of the buildings will be accompanied by an intensive campaign on both social and traditional media, led by ALAN, the Ministry of Health, the Center Hospitalier du Nord and the other campaign partners.
Health Minister Ms. Paulette Lenert underlines: “Rare diseases are an important issue for the patients, their relatives, the healthcare services and the government. We are well aware of the problems and challenges the patients face. To fight against rare diseases, the Ministry of Health is committed – together with actors on the ground – to a national plan, the National Plan for Rare Diseases (PNMR). We want to ensure that people with a rare disease and their loved ones have equal access to diagnosis, appropriate medical and psycho-social care, and broad and equalitarian health and dependency insurance coverage. It is particularly important to me that those affected by a rare disease have the opportunity to fulfil their educational, professional and personal needs and desires.”
In addition, the annual presentation of the progress of the National Plan for Rare Diseases will be held via webinar on the 26th of February.