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According to the World Health Organization (WHO), a disease is classified as rare when it affects up to 65 people in every 100,000 individuals, that is, 1.3 for every two thousand people. In Brazil, it is estimated that 13 million people live with some rare condition, according to a survey.

Most of these diseases - 75% - manifest early in life and affect mainly
children up to 5 years of age. Without early diagnosis and treatment, many people with rare diseases die in childhood.

In 2014, Brazil approved the National Policy for Comprehensive Care for People with Rare Diseases, which approves guidelines and establishes funding sources has existed since 2014 (Portaria MS 199/2014). However, the challenges are still many.

In 2019, the United Nations General Assembly passed a resolution (A/RES/76/132) that recognizes people living with rare diseases and their families as a subpopulation, of around 300 million people in the world, requiring immediate attention from governments and society.
It is important not to leave anyone behind, and to do so, look at some of the challenges we face with rare diseases, such as
- late and difficult to obtain diagnoses;
- lack of case definition for epidemiological surveillance;
- reduced coding and incipient definition in the International Classification of Diseases
(ICD);
- poorly understood physiological and/or molecular mechanisms;
- lack of well-defined lines of care and therapeutic itineraries;
- lack of efficiency of screening programs;
- clinical registries and databases of limited scope;
- fragmented and infrequent drug development;
- insufficient knowledge about most of these diseases.

In a meeting with rare disease patients, medical experts, health managers, health economics analysts and creatives from the communications and innovation area, using design thinking methodology we first asked ourselves what quality of life is for someone living with a rare disease. We understood, after discussion, that the life of a person with a rare disease is considered lesser, less valuable than others. And because of this, rare disease patients and their families spend more of their lives trying to cope with their disease (access to tests, therapies, adjustments to daily routine), than living. Quality of life is being able to think less and less about your illness, and more and more about your dreams. It is to build life memories with your affections, regardless of how long you have to live. And this is what our solution comes to help with, to give these people more time to live. Not in the sense of living longer, but of having more life in their days. Quality of life is not living 24 hours for the disease.

We are creating a collaborative digital platform that will facilitate the journey of rare disease patients through the public and private health care systems.

It will also broker financial help, between individuals and patients, so that they can access goods/services that help improve their quality of life. 

For example, the diagnosed person will be able to receive donations of exams, transportation, assistive technology equipment, etc.
The platform will also generate an unprecedented and complete database on rare disease patients in Brazil. 

This will help in the development of new solutions for rare disease patients in the country. Inspired by airline mileage platforms, we will create a platform that will mediate the needs of patients, with the willingness of people and companies to make donations.

Through vouchers provided by clinics, transport companies, medical supply companies, food companies, and others, we will provide vouchers that can be purchased for airline miles or cash.

The CDD will be responsible for the financial transactions and for the access of people to each of the services based on the urgency, need, and priority of each one. Thus, forming a single list, as happens in the transplant waiting list. 
Structure required for the platform:
Creation of application/website for the integration of services, people and interested parties.
Exporting and updating data from the Patient Associations.
Artificial Intelligence training for navigation in the public health system.
Development of a commercial/relationship area to capture vouchers (offers) from partner companies.
Integration with other mileage program platforms.
Development of a single list of priorities among patients (urgency/need) and qualified by Artificial Intelligence.

Please, found out more about the project here: https://acrobat.adobe.com/link...

In Brazil, an estimated 13 million people live with a rare condition. So, counting their families, there are around 50 million people living with a rare disease who are in need of:

Quality information
Welcoming by society in general
Welcoming by health professionals
Support for the family of the diagnosed person, since many need to terminate their working career to become a family caregiver, without any support to perform this function. 

Rare disease patients and their families spend more of their lives trying to solve the problems related to their diseases than they do living. Whereas quality of life, is being able to think less and less about the disease and more and more about the dreams. Our project aims to help give more life to your days. 

AME and CDD, patient organizations, made with, by and for patients, has been working for 10 years with rare diseases in Brazil, standing out as the leading voice for multiple sclerosis in the country and enabling other organizations to work professionally in the third sector. It has a highly qualified team of more than 25 people who work daily to create a world in which people are not defined or limited by a diagnosis.
AME received in 2017 the Best in Show - Facebook award by WeGoHealth, in 2018, our founder Gustavo San Martin won the Top 5 Most Influent Patient Leaders, the same year we founded CDD to broaden health care. In 2019 we were founding members of FEBRARARAS and in 2022 our CEO and founder assumed the Chair ISPO Patient Representative Roundtable - Latin America and we are Boaard Member Latin America Patient Academy
Thus, AME and CDD work to welcome and inform people with diagnoses and their families, be close to their unmet needs, understand these needs through data generation, and propose solutions and public policies for the cause of health. AME-CDD's mission is to support every human potential to broaden the life prospects of people with rare diseases. 
LLYC LLYC is a global communications, digital marketing and public relations consultancy that helps its clients to proactively make strategic decisions, with the creativity, innovation and experience necessary to execute them minimizing risks, seizing opportunities and always considering the reputational impact. In today's disruptive and uncertain environment, LLYC helps its clients achieve their short-term business goals and chart a course, with a long-term vision, to defend their social license to operate and increase their prestige.
 LLYC (BME:LLYC) is listed on the Spanish alternative stock exchange, BME Growth. It currently has 20 offices in Argentina, Brazil (Sao Paulo and Rio de Janeiro), Colombia, Chile, Ecuador, Spain (Madrid and Barcelona), United States (Miami, New York and Washington, DC), Mexico, Panama, Peru, Portugal and the Dominican Republic. In addition, it offers its services through affiliated companies in the other Latin American markets.
 The two leading industry publications rank LLYC among the top communications firms in the world. It is the #36 consulting firm by revenue worldwide, according to PRWeek's Global Agency Business Report 2022 and ranks 42nd in PRovoke's 2022 Global Ranking. LLYC was voted Best Communications Consultancy in Europe 2022 in the PRWeek Global Awards and Communications Consultancy of the Year in Latin America in the International Business Awards 2021.

Because quality of life is not living 24 hours for the disease.

AME and CDD, patient organizations, made with, by and for patients, has been working for 10 years with rare diseases in Brazil, standing out as the leading voice for multiple sclerosis in the country and enabling other organizations to work professionally in the third sector. It has a highly qualified team of more than 25 people who work daily to create a world in which people are not defined or limited by a diagnosis.

AME received in 2017 the Best in Show - Facebook award by WeGoHealth, in 2018, our founder Gustavo San Martin won the Top 5 Most Influent Patient Leaders, the same year we founded CDD to broaden health care. In 2019 we were founding members of FEBRARARAS and in 2022 our CEO and founder assumed the Chair ISPO Patient Representative Roundtable - Latin America and we are Boaard Member Latin America Patient Academy
Thus, AME and CDD work to welcome and inform people with diagnoses and their families, be close to their unmet needs, understand these needs through data generation, and propose solutions and public policies for the cause of health. AME-CDD's mission is to support every human potential to broaden the life prospects of people with rare diseases. 
LLYC LLYC is a global communications, digital marketing and public relations consultancy that helps its clients to proactively make strategic decisions, with the creativity, innovation and experience necessary to execute them minimizing risks, seizing opportunities and always considering the reputational impact. In today's disruptive and uncertain environment, LLYC helps its clients achieve their short-term business goals and chart a course, with a long-term vision, to defend their social license to operate and increase their prestige.
 LLYC (BME:LLYC) is listed on the Spanish alternative stock exchange, BME Growth. It currently has 20 offices in Argentina, Brazil (Sao Paulo and Rio de Janeiro), Colombia, Chile, Ecuador, Spain (Madrid and Barcelona), United States (Miami, New York and Washington, DC), Mexico, Panama, Peru, Portugal and the Dominican Republic. In addition, it offers its services through affiliated companies in the other Latin American markets.
 The two leading industry publications rank LLYC among the top communications firms in the world. It is the #36 consulting firm by revenue worldwide, according to PRWeek's Global Agency Business Report 2022 and ranks 42nd in PRovoke's 2022 Global Ranking. LLYC was voted Best Communications Consultancy in Europe 2022 in the PRWeek Global Awards and Communications Consultancy of the Year in Latin America in the International Business Awards 2021.

We believe that our project can solve many problems connected with the rare disease patient's journey and also help people with their sense of community. So the challenge will help us to put this project into practice, helping such a large community in need of solutions to the problems of daily life. 

Our solution is innovative because it thinks not only about the disease and diagnosis, but about solving the small daily challenges of having a rare disease, which can take a long time to resolve. Furthermore, our system connects those who want to help with those who need help. And it also helps, with artificial intelligence, to navigate health systems, something that today takes a lot of people's time, and in the case of rare diseases, time is life.

We want, first of all, to help people who need resources for their activities of daily living efficiently, effectively, and quickly. In the medium term, we want rare disease patients to develop greater autonomy to navigate health systems and to be able to help each other in this ecosystem. In the long term, we want rare disease patients to be able to use their days more to build relationships, life stories, and affections, and not just to take treatments and think about the disease. In addition, the data gathered through the database should guide us in understanding the most frequent challenges faced by rare disease patients, so that we can more quickly seek solutions.

- Number of people enrolled in the base

- Number of connections between donors and beneficiaries

- Percentage of decrease in time to access goods and services

- Number of data problems raised and solved

- Number of partners in the project

- Percentage of satisfaction of the rare disease patient community

We understand that people with rare disease diagnoses may often want to help other fellow patients with the same diagnosis but often don't know how. On the other hand, many people with rare diseases need support and are feeling lost in their diagnosis. Our platform aims to be a collaborative ecosystem that connects people and brings more quality time into patients' lives. 

Our project will utilize some modern technologies, as a sotware that agregated all the services we want to offer for the community of people with rare diseases; the IA, to help the navegation in the health sistems; a database to select the problems and solutions and, in ohter hand, an traditional tecnhology to connect who needs help with the ones who wants help: the dialogue. 

Our team is made up of 80% women, including the area leaders, who are all women. Of this team, 30% are people diagnosed with at least one rare disease, and we also have caregivers for people with chronic diseases. The team is also composed of people with disabilities and people from the LGBTQIA+ community. For AME and CDD diversity is a creative value, because the more diverse a team is, the greater the number of creative solutions. 

At AME and CDD, starting from our mission to support the human potential for rare disease patients to develop and live a dignified life, we began our work in spreading reliable, science-based information to get closer to our audience. Through communication and the welcoming team, we welcome people and understand their unmet needs. Based on the identification of these needs, we develop public policies so that people can live better and have easier acces to healthcare. And we follow the communication flow so that they know about the public policies available and make good use of the health systems. 

In AME and CDD we have a hybrid model of finance using Service subsidization and free-for-service models. LLYC is a global communications, digital marketing and public relations consultancy and is listed on the Spanish alternative stock exchange, BME Growth. 

In 2021 AME and CDD carried out 32 projects, with external sponsorship, raising approximately R$4.000.000,00, and expects to raise R$6.000.000,00 in 2022 with the projects.