Raríssimas
Raríssimas
Raríssimas

On November 20, 2017, YOURS GuestHouse and YOURS Bistrô have teamed up to help a cause.

We have an important protocol.

We commit ourselves as a company and employees, to help “Raríssimas”!

Raríssimas was founded on April 2002 and is a non-profit institution. The strength and courage for its creation is due to the dream of Marco, son of Paula Costa, the founder of “Casa dos Marcos”, a project that came later.

Marco, had “Cornelia de Lange” Syndrome, a rare pathology, associated with congenital malformations and delayed psychomotor development. Then, knowing there were no schools that could help accommodating people like him, he asked his mother to create a space for rare girls and boys.

Marco was 16 when he made that request, and unfortunately, he died shortly afterwards, without seeing his desire fulfilled. However, roughly 7 years after this special request, the concept “Casa dos Marcos”, in Moita, Portugal, a unique space in the World for people with rare and very rare diseases, was born, based on a lot of altruism.

“Not being for Marco, it’s a home for the other Marcos of Portugal.”, said Paula Costa.

The “House of Mark” includes a residential home, intended for patients that cannot be adequately monitored for different health conditions. It has capacity for 24 users and the autonomous residence with capacity for 5 people.

Here, everything is designed for rare and very rare diseases, and for each of them in particular, by providing differentiated services of technical and scientific excellence.

The objectives are:

  • allow users a significant improvement in life quality;
  • promote equal rights for people with rare diseases and their families;
  • sensitizing the community to the reality of rare diseases, alerting the media to the importance of the organizations that represent them;
  • demonstrate to society the importance of the associative movement in supporting and accompanying rare disease patients and their families.

Parallel to the “Casa dos Marcos”, there are two “Raríssimas” units, for those who need access to consultations, with capacities for more than 4000 users per year.

There are, in Portugal, about eight hundred thousand rare Portuguese who need help.

There are a number of ways we can help them, whether through donations, patronage, sponsoring the treatment of a rare person, or volunteering, helping and accompanying patients and families.

Join YOURS GuestHouse and YOURS Bistro and we will help “Raríssimas“!

National Association of Mental and Rare Disabilities – Raríssimas

Rua Cidade de Rabat, 34 – 3º Dto. 1500-163 Lisbon

Telephone: 21 778 61 00/96 965 74 45

Fax: 21 778 60 99

E-mail: info@rarissimas.pt

Website: www.rarissimas.pt

 

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