The Amgen Prize: Innovation for Patients with Rare Diseases
Radar el canal de las Enferedades Raras (Radar the channel for Rare Diseases)
What is the name of your solution?
Radar el canal de las Enferedades Raras (Radar the channel for Rare Diseases)
Provide a one-line summary of your solution.
Radar is an information channel on rare diseases, which informs, connects and empowers Spanish-speaking patients, families and caregivers.
In what city, town, or region is your solution team headquartered?
San José, Costa RicaIn what country is your solution team headquartered?
In which countries do you currently operate?
What specific problem are you solving?
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.
What is your solution?
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.
Who does your solution serve, and in what ways will the solution impact their lives?
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.
Which dimension of the Challenge does your solution most closely address?
Promote community and connection among rare disease patients and their caregivers.What is your solution’s stage of development?
GrowthWhat makes your solution innovative?
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.
Why are you applying to the Prize?
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.
Who is the Team Lead for your solution?
Ronny Garro Ureña
How are you and your team well-positioned to deliver this solution?
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.
What type of organization is your solution team?
Nonprofit
What are your impact goals for the next year and the next five years, and how will you measure and achieve them?
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.
Describe in simple terms how and why you expect your solution to have an impact on the problem.
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.
Which of the following categories best describes your solution?
A new application of an existing innovation or technology
Please select the technologies currently used in your solution, if any:
Your elevator pitch:
If your solution has a website or an app, provide the links here:
https://www.youtube.com/results?search_query=red+de+enfermedades+raras+costa+rica
How many people work on your solution team?
Full time: two team members
Part time: 10 people.
Four of them are contractor's staff, the rest are part of our organization.
How long have you been working on your solution?
Two years and a half.
Tell us about how you ensure that your team is diverse, minimizes barriers to opportunity for staff, and provides a welcoming and inclusive environment for all team members.
We have both, patients and non patients, also families, and caregivers in our team.
What is your business model?
We want to use Radar as a founding tool, selling advertising inserts.
Do you primarily provide products or services directly to individuals, to other organizations, or to the government?
Individual consumers or stakeholders (B2C) (e.g. patients or caregivers)What is your plan for becoming financially sustainable, and what evidence can you provide that this plan has been successful so far?
So far this project is only sustained by our team member effort, and ocasionally aids.
Solution Team
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RG
Mr. Ronny Garro-Ureña Master, Red de Enfermedades Raras de Costa Rica
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What is the name of your organization?
Red de Enfermedades Raras de Costa Rica