Radar el canal de las Enferedades Raras (Radar the channel for Rare Diseases)

Red de Enfermedades Raras de Costa Rica

Rare diseases affect between 5% to 7% of the world's population, according to RDI. In all cases, these are people who take an average of 5 years to achieve a correct diagnosis and then must fight to get the proper treatment. In Latin America, these problems are exacerbated because authorities in many cases do not even recognize the existence of these conditions, so doctors are not able to diagnose and have very limited therapeutic options when a diagnosis is achieved. Faced with this situation, people feel confused, abandoned, and that is where "Radar, the channel for Rare Diseases" comes into action, seeking to inform, connect and empower Spanish-speaking patients, because although we are based in Costa Rica, our impact is throughout the Spanish-speaking world.

Radar, the channel for Rare Diseases, is a YouTube channel, which also uses other social networks of the Rare Diseases Network of Costa Rica (Red de Enfermedades Raras de Costa Rica), for more impact (we have more than 5,000 followers in our profiles, and thousands of monthly interactions), to inform, connect and empower patients, family members and caregivers. Through videos that present various information, interviews with patients, specialists, caregivers, authorities and any actor involved with rare diseases, as well as short videos on specific topics, we provide the opportunity for people and their families to take control of their situation and the therapeutic and legal possibilities available to them to assert their right to a high quality of life.

Canal de Youtube de Radar

We seek to impact patients, family members and caregivers of rare diseases, but also health professionals involved with these conditions, as well as decision makers, all through constant informative work.

When a patient and his or her family become aware of their rights and therapeutic and legal possibilities, as well as communicate with other people who live with the same condition, empowerment is achieved that allows them to assert their rights in a better way, helping them to integrate as part of a community and in this way their quality and perspective of life is impacted, understanding that they are not alone and that there are people and organizations willing to support them on their path.

Although we are in a stage of growth, in which we are going to launch Radar as a rebranding of the Rare Diseases Network of Costa Rica, we do not have established donors, but rather occasional contributions. So far we have managed to connect patients with various rare diseases in Costa Rica, but we have also connected people from other countries with national organizations that can provide them with support, as well as we have facilitated the connection of patients from various countries.

Radar is the only informative channel in video format, specialized in Rare Diseases in Spanish. We know that the work is just beginning, and that gives us great enthusiasm and strength.

We hope to serve as an inspiration to other organizations in the world so that they can become a reliable and constant source of information to support more people with rare diseases every day and thus raise a strong voice so that global society recognizes in all its scope the needs and rights of this population.

The Amgen Award will allow us to operate the Radar project without budget concerns for the next 10 years, that would be a blessing. We have the human resources and knowledge to continue growing, what we lack is the financial support.

I am the executive director of the Rare Diseases Network of Costa Rica, within our organization we have patients, family members, caregivers and other collaborators who are our reason for being as a Network. The design of this project has been guided at all times by the concerns of people in the Rare Disease community, so it incorporates their unique perspective and interests.

The Network does not work only with Radar, in reality this is a project of communication, connection and empowerment, but our daily work also involves supporting and guiding patients and families to obtain their diagnosis and treatment, many times using resources for protection against the law to be able to achieve it, that has been our work since the beginning of the Network.

Over the next year we hope to consolidate ourselves within the rare diseases community in Costa Rica, that is, to be known and consulted as a reliable source of information.

Over the next 5 years we hope to become a regional reference, in which the Latin American population with rare or related diseases knows us and comes to us to become informed and empowered.
We can measure this using social media performance tools, so tracking will be very precise. This will allow us to make adjustments when necessary, if the results are not as expected.

The rare disease community is lacking and in need of reliable and constant information, so we count on Radar to have broad acceptance and in this way we achieve our purpose of being a means of information, connection and empowerment.

Full time: two team members

Part time: 10 people.

Four of them are contractor's staff, the rest are part of our organization.

Two years and a half.

We have both, patients and non patients, also families, and caregivers in our team.

We want to use Radar as a founding tool, selling advertising inserts.

So far this project is only sustained by our team member effort, and ocasionally aids.