Casa dos Raros aims to reduce the journey of patients with a rare disease from the first symptoms to diagnosis and treatment, through the development of actions that result in a better quality of life for patients and their families, in a network formed by specialized centers, strategic partners and qualified employees.
Our purpose
ES
About us
Click and learn more about our vision.
Click and learn more about our values.
Click and learn more about our mission.
Prof. Dr. Roberto Giugliani - Medical geneticist
"
Patients with rare diseases spend years traveling through different doctors and doing a multitude of tests in search of a diagnosis, which almost always comes too late. It is necessary to shorten this journey, to give the rare the opportunity for a better life.
Antoine Daher - Entrepreneur
"
All lives have the same value.”
Click and learn more about our principle.
Vision
To be recognized nationally and internationally as a reference organization in health in the area of rare diseases, through the development of actions that result in a better quality of life for patients and their families, in a network formed by specialized centers, strategic partners and qualified employees.
Mission
Promote full assistance for patients with rare diseases. Transform the results of scientific and clinical research into products for more effective diagnoses, treatments and preventive actions. Contribute to academic education and multidisciplinary professional training in the area of rare diseases and to greater access to effective solutions in this area for all. Expand the use of genetic tools throughout medicine, based on a pioneering attitude of forming a network of specialized partnerships, aiming at greater comfort and agility in patient care.
Values
- Efficient governance as a foundation
- Ethical and effective application of knowledge
- Protagonism, innovation and humanization
- Excellence, quality and safety
- Compassion and cooperation
- Inclusion, sense of justice and diversity
- Sustainability and social responsibility
- Networking and Valuing Partnerships
- Democratization in the care of patients with rare diseases
With you we will be able to finish and equip Casa dos Raros with all the furniture and utensils we need to care for children and other people with rare diseases.
The project is a pioneer in Latin America, is located in Porto Alegre - Rio Grande do Sul - Brazil and is in the final stage of construction. With approximately 2 thousand square meters, it will be a space for the development of:
1. full assistance for patients with rare diseases,
2. training and education of professionals and
3. scientific and clinical research.
The project is a pioneer in Latin America, is located in Porto Alegre - Rio Grande do Sul - Brazil and is in the final stage of construction. With approximately 2 thousand square meters, it will be a space for the development of:
1. full assistance for patients with rare diseases,
2. training and education of professionals and
3. scientific and clinical research.
The Casa dos Raros
A DREAM UNDER CONSTRUCTION
Scenario of rare diseases in the world and in Brazil
600 thousand
of rare diseases patients in the State of Rio Grande do Sul alone.
13 million
Brazilians may be suffering from some kind of rare disease.
7 thousand
types of rare diseases cataloged, 85% of which are of genetic origin and affect mostly children.
6%
of the world's population has some type of rare disease.
There are around
According to the World Health Organization,
Your donation will make a difference!
Collaborate for the acquisition of the necessary equipment for the operation of our headquarters.
OTHER VALUE
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ES
*merely illustrative images
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+55 51 3455 0000
Rua São Manoel, 722,
Porto Alegre , Rio Grande do Sul, Brasil.
Porto Alegre , Rio Grande do Sul, Brasil.
Casa dos Raros is audited by KPMG.
Feito por ϟ doare.org