Casa dos Marcos
The Casa dos Marcos is a center for rare diseases in the small Portuguese town of Moita . It is considered a European pioneering project. An estimated 800,000 people in Portugal suffer from rare diseases, and it is estimated that there are up to 36 million people across the EU.
history
The founding idea goes back to the wish of the then 16-year-old Marco, who suffered from Cornelia de Lange Syndrome . In September 2005 he wished for a suitable school to go to. With the help of the Moita city administration, the association RARÍSSIMAS - Associação Nacional de Deficiências Mentais e Raras (German: RARE - National Association for Mental Disabilities and Rare Diseases), founded in 2002, set up such a school. The president of the association is the mother of Marco, Paula Brito e Costa, who died in January 2006 and is also responsible for the name. Accordingly, the Casa dos Marcos ( Portuguese for: House of the Marcos') could no longer be the dream house for Marco, but that of all the other Marcos in the country.
Maria Cavaco Silva , wife of President Cavaco Silva , became aware of the incident in April 2006 through an article in a magazine . She became the patron of the RARÍSSIMAS association and gave a speech at the laying of the foundation stone for Casa dos Marcos on July 1, 2010. The facility was finally opened on November 25, 2013, by Mrs. Cavaco Silva, and Gilberto dos Reis , the bishop of the Diocese of Setúbal . There were protests of around 200 people, mostly employees in the Moita public service. They protested against the new state budget, which continued to be dominated by rigid austerity policies , and once again included cuts in the health system and, in particular, repeated cuts in wages while increasing the working hours of public employees.
On November 7, 2014, Queen Letizia of Spain visited Casa dos Marcos as part of the regular “ Ibero-American Meetings on Rare Diseases” , which in 2014 was hosted by Portugal. The visit, which was widely supported by the media, was again accompanied by protests in front of the house. The protests were again directed against the new national budget of Portugal, which provides for renewed austerity measures in the public service and in the national health system, the Serviço Nacional de Saúde .
Key figures and structure
The building complex of the Casa dos Marcos is 5,500 square meters and cost 5.5 million euros. 75 people work here, including 30 rare disease specialists. The facility was financed by the municipality, public authorities and private donations, such as the foundation of the Mota-Engil construction company . The Casa dos Marcos is a non-profit, privately owned, social institution ( Instituição Particular de Solidariedade Social ).
The complex includes social, therapeutic and medical facilities at the same time. On the one hand, Casa dos Marcos maintains leisure facilities, school rooms, a dormitory and living rooms for patients who live independently. On the other hand, it offers an outpatient clinic, a hospital and a center for physical and rehabilitative medicine with preventive departments. The Casa dos Marcos serves as a boarding school for 68 children with rare diseases . There are also other facilities such as Snoezelen -Spaces and the hotline Linha Doenças Raras (Hotline Rare Diseases). The Casa dos Marcos also offers a Respite Center , where those in need of care receive short-term care in order to allow their relatives to relax. Special mention should also be made of the research center and the further education facilities of the Casa dos Marcos.
In addition to the therapy center for rare diseases, Casa dos Marcos also functions as a health center for the surrounding communities. The Casa dos Marcos is the point of contact for around 4,000 outpatients per year, and around 200 patients are treated physically and rehabilitatively here every year .
Casa dos Marcos is part of EURORDIS, the European association of patient organizations for rare diseases.
In Council Maia in northern Portugal, a second complex is planned as the Quinta dos Marcos is to continue the work of Casa dos Marcos also in the north of the country. The municipal administration of Vila Nova da Telha has already made the land available.
Web links
Individual evidence
- ↑ a b Self-portrait of Casa dos Marcos ( Memento of the original from December 2, 2014 in the Internet Archive ) Info: The archive link was automatically inserted and not yet checked. Please check the original and archive link according to the instructions and then remove this notice. (port.), accessed November 21, 2014
- ↑ a b c Article on the opening of the Casa dos Marcos ( Memento of the original from December 20, 2014 in the Internet Archive ) Info: The archive link was inserted automatically and has not yet been checked. Please check the original and archive link according to the instructions and then remove this notice. at www.setubaltv.com, accessed November 21, 2014
- ↑ Copy of the speech on the website of the State Presidency , accessed on November 21, 2014
- ↑ Article on the opening of Casa dos Marcos on the website of the ADN news agency, accessed on November 21, 2014
- ↑ Article of November 7, 2014 on the website of the Visão magazine , accessed on November 21, 2014
- ↑ Article of November 7, 2014 on the website of the daily newspaper Jornal de Notícias , accessed on November 21, 2014
- ↑ Video recording of a television broadcast by SIC , accessed on YouTube on November 22, 2014
- ↑ Mota-Engil website ( page no longer available , search in web archives ) Info: The link was automatically marked as defective. Please check the link according to the instructions and then remove this notice. , accessed November 21, 2014
- ↑ List of EURORDIS partner organizations , accessed on 21 November 2014
- ↑ Article on the planned Quinta dos Marcos ( Memento of the original from December 2, 2014 in the Internet Archive ) Info: The archive link was automatically inserted and not yet checked. Please check the original and archive link according to the instructions and then remove this notice. on the website of the RARÍSSIMAS association, accessed on November 21, 2014
