Unidos pela Vida - Brazilian Institute for Cystic Fibrosis Care - is committed to improve the quality of life of people with cystic fibrosis and their families. Our mission is to advocate for people with cystic fibrosis in Brazil to learn about their health and rights, have equity in access to early diagnosis, and better treatments. We will fight until all people with cystic fibrosis have the best they deserve.
In 2021, the Unidos pela Vida - Brazilian Institute for Cystic Fibrosis Care - completed 10 years of existence. A decade of hard work on behalf of people with cystic fibrosis and their families. Learn a little bit of our story in 10 facts:
Facts of Our History
Origin
Unidos pela Vida Institute was born after our founder, Veronica Stasiak Bednarczuk, had a late diagnosis of cystic fibrosis at age 23, after dozens of pneumonias, infections, surgeries, and other serious health problems.
Foundation
The diagnosis was the propeller for a blog to disclosure cystic fibrosis and help to get more early diagnoses; and a group to fight for the rights of people with CF, which later became Unidos pela Vida Institute.
The first project
Even before became official, the Institute's first major project emerged: the “Equipe de Fibra”, with people from all over Brazil wearing a custom shirt to disseminate the benefits of physical activity for people with cystic fibrosis.
Mobilization
In 2013, the first year of the World Cystic Fibrosis Day (September 8), Unidos pela Vida realized, with the support of volunteers and CF assistance associations around Brazil, one of the biggest actions in the world.
Awareness
Since 2014, we have promoted the National Cystic Fibrosis Awareness Month, which later became known as Purple September, the main awareness campaign about the disease in Brazil.
Support
Almost 7,000 people have already counted on our care and support, including people with cystic fibrosis, family members, students, healthcare professionals, and associations.
Events
In 10 years, Unidos Pela Vida already realized more than 200 events (lectures, courses, live streamings, conferences, etc.), both in person and online, which brought together more than 38,000 people from all over the country.
Fight for public policies
Our work resulted in the 3rd and 4th largest civic participation at the time in the history of Conitec (National Commission for the Incorporation of Technologies in the SUS), with more than 20 thousand inputs from society, and more than 700 scientific contributions.
Physical activity awareness
We have the largest cystic fibrosis physical activity group in Latin America, with more than 1,000 participants in street running events, and international competitions for transplanted patients.
Acknowledgment
In 2018, 2019, 2020 and 2021 we were recognized by one of the biggest awards in the Brazilian Third Sector, the “Best NGOs Award” (Prêmio Melhores ONGs), as one of the 10 Best Small nonprofits in the country. In 10 years, we accumulated more than 25 awards and accolades.
Testimonials
We believe that care and support are fundamental to everyone's well-being. Check it out testimonials that demonstrate the importance of our network for people with cystic fibrosis and their families.
Daniele Soares
Diagnosed with CF
Talking about Unidos pela Vida e is something fantastic for me, because since my first contact, since the first invitation I received to participate in actions carried out by them, I was always very well treated and welcomed. Whenever I had any doubts related to the disease, I was also helped. I have always felt very included in the activities that the Institute carries out and I have great affection for its team, as I believe that this inclusion makes people feel important.
Leonardo Napeloso
Diagnosed with CF
Since I got to know Unidos pela Vida and the story of Veronica, the identification was immediate, and I never stopped following it. Seeing everything the team has achieved and everything they do for us, fills me with pride. They are a symbol of how to overcome cystic fibrosis.
Marindia Cecchetti Lahm
Diagnosed with CF and lung transplant
Today, with Instituto Unidos pela Vida, I can meet other people with the disease, learn about how each one of them faces the obstacles presented by cystic fibrosis. The Institute's website is always updated with important information and promotes real public interest in the subject. I am grateful to the Institute for bringing me this tranquility.
Vanessa Fernandes Martins
Mother of a girl diagnosed with CF
Finding the website and social media of Instituto Unidos pela Vida also helped me a lot and I was able to receive comfort and help through the content published on these channels. I would like to take this opportunity to thank the entire team of the Institute, as you make all the difference in the lives of families and people who have cystic fibrosis across the country.
Camila Pereira Gandolfi
Mother of a boy diagnosed with CF
I got to know the Institute through the Internet, but shortly afterwards I also had several indications to follow its communication channels in the support groups I participate in. Unidos pela Vida, without a doubt, helps the entire cystic fibrosis community in the country with the information disseminated and the support it provides.
Edilma Maria Silva
President of ASPAFIC
My message is one of gratitude. In such difficult times, we could not receive a better welcome and affection than we received from Unidos pela Vida. Participating in your projects is something unique to recharge our energies and increase our will to persevere in the fight.
Felipe Alberto
Father of a boy diagnosed with CF
Cystic fibrosis is part of us, but it's not all we are. We need to see ourselves beyond it and understand that, even with all the difficulty, dreaming and achieving our goals is possible.
Rayane Eloá
Mother of a boy diagnosed with CF
We are very grateful for the miracle that happened in our lives and for the newborn screening test that allowed early diagnosis and quick search for appropriate treatment. My dream now is for cystic fibrosis to be better known and for people to have access to quality information on the subject so that no mother suffers what I suffered for the lack of information.
Fabio Bombonatto
Diagnosed with CF
I got to know Unidos pela Vida when a friend of mine tagged me in one of the Institute's social media posts. From there, I became more interested and started following it. In one of the posts, I met Cristiano Silveira, coordinator of the “Equipe de Fibra”, and from then on, I became part of this team!
Paulo Fiore
Diagnosed with CF
Dedicate yourself to physiotherapy, to the treatments recommended by the team that accompanies you and, like me, be part of the “Equipe de Fibra”. I know that we can all have quality of life, health and live well, and with dedication we can achieve this great goal.
Daniele Soares
Diagnosed with CF
Talking about Unidos pela Vida e is something fantastic for me, because since my first contact, since the first invitation I received to participate in actions carried out by them, I was always very well treated and welcomed. Whenever I had any doubts related to the disease, I was also helped. I have always felt very included in the activities that the Institute carries out and I have great affection for its team, as I believe that this inclusion makes people feel important.
Leonardo Napeloso
Diagnosed with CF
Since I got to know Unidos pela Vida and the story of Veronica, the identification was immediate, and I never stopped following it. Seeing everything the team has achieved and everything they do for us, fills me with pride. They are a symbol of how to overcome cystic fibrosis.
Marindia Cecchetti Lahm
Diagnosed with CF and lung transplant
Today, with Instituto Unidos pela Vida, I can meet other people with the disease, learn about how each one of them faces the obstacles presented by cystic fibrosis. The Institute's website is always updated with important information and promotes real public interest in the subject. I am grateful to the Institute for bringing me this tranquility.
Vanessa Fernandes Martins
Mother of a girl diagnosed with CF
Finding the website and social media of Instituto Unidos pela Vida also helped me a lot and I was able to receive comfort and help through the content published on these channels. I would like to take this opportunity to thank the entire team of the Institute, as you make all the difference in the lives of families and people who have cystic fibrosis across the country.
Camila Pereira Gandolfi
Mother of a boy diagnosed with CF
I got to know the Institute through the Internet, but shortly afterwards I also had several indications to follow its communication channels in the support groups I participate in. Unidos pela Vida, without a doubt, helps the entire cystic fibrosis community in the country with the information disseminated and the support it provides.
Edilma Maria Silva
President of ASPAFIC
My message is one of gratitude. In such difficult times, we could not receive a better welcome and affection than we received from Unidos pela Vida. Participating in your projects is something unique to recharge our energies and increase our will to persevere in the fight.
Felipe Alberto
Father of a boy diagnosed with CF
Cystic fibrosis is part of us, but it's not all we are. We need to see ourselves beyond it and understand that, even with all the difficulty, dreaming and achieving our goals is possible.
Rayane Eloá
Mother of a boy diagnosed with CF
We are very grateful for the miracle that happened in our lives and for the newborn screening test that allowed early diagnosis and quick search for appropriate treatment. My dream now is for cystic fibrosis to be better known and for people to have access to quality information on the subject so that no mother suffers what I suffered for the lack of information.
Fabio Bombonatto
Diagnosed with CF
I got to know Unidos pela Vida when a friend of mine tagged me in one of the Institute's social media posts. From there, I became more interested and started following it. In one of the posts, I met Cristiano Silveira, coordinator of the “Equipe de Fibra”, and from then on, I became part of this team!
Paulo Fiore
Diagnosed with CF
Dedicate yourself to physiotherapy, to the treatments recommended by the team that accompanies you and, like me, be part of the “Equipe de Fibra”. I know that we can all have quality of life, health and live well, and with dedication we can achieve this great goal.
We want to be recognized as a reference institution on cystic fibrosis for the empathic reception, for the delivery of innovative, consistent and ethical results, and for promoting joint action.
Reasons to Donate
Awareness
Knowledge saves lives. By supporting our work, you strengthen the Institute’s mission as well as increase awareness of cystic fibrosis in Brazil.
1
Disclosure
Currently, our website has around 3 million visits per year. With your help, we can bring even more information and knowledge to more people.
2
Support
Everyday we support people with cystic fibrosis and family members interested in understanding the disease to have a better quality of life and access to treatments.
3
Development
Your donation helps to guarantee the necessary resources for our projects, which also aim to training and developing the associations that support CF patients throughout Brazil.
4
Research
Promote actions aimed at scientific research and educational projects, such as guidance for students and health professionals who are dedicated to cystic fibrosis subject.
5
Professional qualification
Help maintain our e-learning platform with video classes, workbooks and forums for professionals and academics.
6
Physical activities
Regular physical activity is critical in the treatment of cystic fibrosis. The exercise team (Equipe de Fibra) works to encourage the practice of physical activities among people with CF and their families.
7
Advocacy
Our actions with governmental organizations such as Anvisa and Conitec help to advise, defend, and guarantee the rights of people with cystic fibrosis in Brazil.
8
Representativeness
With your donation, Unidos Pela Vida will be able to expand its participation in national and international conferences to disseminate our experience.
9
Recognition
We have been recognized with more than 25 national awards. With your support, we are sure that the next 10 years will be full of achievements!
10
Awareness
Knowledge saves lives. By supporting our work, you strengthen the Institute’s mission as well as increase awareness of cystic fibrosis in Brazil.
1
Disclosure
Currently, our website has around 3 million visits per year. With your help, we can bring even more information and knowledge to more people.
2
Support
Everyday we support people with cystic fibrosis and family members interested in understanding the disease to have a better quality of life and access to treatments.
3
Development
Your donation helps to guarantee the necessary resources for our projects, which also aim to training and developing the associations that support CF patients throughout Brazil.
4
Research
Promote actions aimed at scientific research and educational projects, such as guidance for students and health professionals who are dedicated to cystic fibrosis subject.
5
Professional qualification
Help maintain our e-learning platform with video classes, workbooks and forums for professionals and academics.
6
Physical activities
Regular physical activity is critical in the treatment of cystic fibrosis. The exercise team (Equipe de Fibra) works to encourage the practice of physical activities among people with CF and their families.
7
Advocacy
Our actions with governmental organizations such as Anvisa and Conitec help to advise, defend, and guarantee the rights of people with cystic fibrosis in Brazil.
8
Representativeness
With your donation, Unidos Pela Vida will be able to expand its participation in national and international conferences to disseminate our experience.
9
Recognition
We have been recognized with more than 25 national awards. With your support, we are sure that the next 10 years will be full of achievements!