DREPACARE
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Mission Statement
The Drepacare Patient Association’s main mission is to combine Digital Technology and Health. We create and offer innovative solutions for people with sickle cell disease. The main mission of the Drepacare Patient Association is to improve the quality of life of people with sickle cell disease. To achieve this we focus our work on: - Analysis of the needs for each patient subgroup - Patient engagement - Personalized patient follow-up by Health Professionals - Access to information - Therapeutic Education - Improvement of care - Fighting disease-related isolation In order to reach a large audience, we created a mobile application offering personalized, preventive, educational information for people suffering from sickle cell disease, as well as for Health Professionals. The role of this platform is to better inform, accompany, and offer support and advice on a daily basis to patients with sickle cell disease, the most prevalent genetic disease in France, as well as in the rest of the world. Through our actions, we provide solutions to the lack of available medical information, and we oppose disinformation and misconceptions. Through the mobile application Drepacare, the objective is to provide patients with keys to better manage their disease, and have a better quality of life. We develop empowerment by helping patients in the daily management of their disease, we provide prevention features such as “Pain” feature, informative features through articles, and supporting features as the "Forum Drepacare'' where the community can ask questions and get feedback from other members, share informations and experiences about the illness, and have psychological support from the community. Our aim is also to compensate for the lack of health professionals specialized in sickle cell disease around the world. All this in order to improve the care pathway of this condition, therefore improving their general quality of life. A first version of the application was uploaded on June 19, 2021
About This Cause
The context A public health priority since 2004 in France, and by the World Health Organization since 2006, sickle cell disease is a chronic disease, and the most prevalent genetic disease in France and around the world. Each year, 300,000 children are born with sickle cell disease. In the absence of screening and care 150,000 of them will die before the age of 5. Sickle cell disease is caused by a genetic mutation that affects the structure of the red blood cell, which changes from a round shape to a sickle shape. It is manifested by violent attacks that are very painful (the deformed red blood cells clump together and cause blockage of blood vessels), anemia and chronic fatigue, increased susceptibility to infections and many complications. The pain and suffering of sickle cell disease is undescribable. The occurrence of crises and disabling complications (i.e.: bone, neurological, etc.) requires frequent hospitalizations. However, this disease remains unrecognized. There are few specialists available across the world. This situation is worsened by the lack of available quality information, most sickle cell reference centers are located in big cities. The distance and availability of health professionals sometimes represent a barrier to regular medical consultations and care in the event of a crisis. Health professionals therefore do not always have a complete history of crises, hospitalizations, complications and other information useful for better monitoring of sickle cell patients. This situation leads to a general lack of knowledge of the condition, good practices and attitudes to adopt for better prevention of painful crises and complications. Today unfortunately, even though there are some treatment modalities, there is still no cure for sickle cell disease other than bone marrow transplant which is a very complicated procedure for sick patients to go through. Early screening, early regular and personalized care, associated with a healthy lifestyle, compliance with the daily recommendations drawn up by the High Authority for Health (HAS) and the World Health Organization (WHO) can improve the quality of life of sickle patients, and reduce the disease complications. With the rise of digital health, the lack of available tools in the field of sickle cell has greatly motivated us to find an innovative solution to overcome this deadly debilitating condition which is still affecting millions of men and women, young and old, in France, and around the world. So how did the project begin? During a master's degree in public health, the Drepacare project was born as a beautiful friendship developed between Laetitia DEFOI, Meryem AIT ZERBANE and Anouchka KPONOU. Our personal stories were the reason behind our fight. Laetitia has been suffering from sickle cell disease since her early childhood, and Anouchka has lost two close members of her family to this terrible disease. We decided to innovate the available tools necessary to improve the quality of life of sickle cell disease patients. Our goal is to create and offer personalized disease follow-up features through the Drepacare mobile application. With the Drepacare application, we believe we can help millions of sickle cell disease patients around the world to improve their quality of life. —------------------------------------------------------------------------ What is Drepacare? The Drepacare application is the first informative, preventive and personalized monitoring application dedicated to people with sickle cell disease, their family, and healthcare professionals, offering the first social network where patients, parents of sickle cell patients and family can discuss, ask their questions, and share information. It brings together simple, fun features that are very useful for sickle cell patients. such as : Managing features : Complications such as osteonecrosis are very common in the sickle cell population. Thanks to the pain feature, users can enter the history of the pain they are feeling, the pain threshold and its location as well as the date. This information can be downloaded and made available to the attending physician. They are very important because they make it possible to keep a reliable track of minor painful or major seizures so that the doctor can adjust the treatment if necessary. Informative features: allow the sickle cell patient to have current reliable information with simple vocabulary about sickle cell disease, and other topics related to the disease The social network : is the first digital community that brings together patients with sickle cell disease. Patients need to discuss with people who are going through the same difficulties, the same dismay in the face of the disease, to talk, to share their experiences and feedbacks, to advise each other, to help each other, to cheer themselves up, to no longer feel alone, isolated in the face of illness. And other beneficial features. The choice of these features was based on the various messages we received on our social networks, and the feedback from patients and health professionals, the summaries of the literature, and the satisfaction questionnaires carried out with our community of patients. We use the words Community because it is really the word that describes our relationship with our users, Drepacare is a big family that brings together sickle cell patients from all over the world, and today we have formalized this with the launch of the first social network dedicated to sickle cell disease, a secure forum where patients, parents of sickle cell patient and family can discuss anonymously about sickle cell issues. Patients with sickle cell disease are at the heart of the creation of our tool. Laetitia is a nurse, co-founder of the Drepacare project, and a sickle cell patient. She puts in the project her knowledge, skills, and her professional as well as personal experience. In addition to this, from the start we wanted to create a tool for and with patients. That’s the reason why we have regularly organized discussion groups to identify, summarize and diagnose their needs. Patients intervene in three phases of the project: - Creation, - Test, - Evaluation. The involvement of patients is essential for us. It is for this reason that we first created in June 2017 a prototype available only on Playstore in order to carry out an evaluation over time (2 years). It has been tested and used by more than 3,000 people. This prototyping phase was an opportunity for us to evaluate the content of our tool and its usefulness to our target, in order to work on improvements and ameliorations. Today, version 1.0 of the Drepacare application is available for free on all stores (Play Store and Apple store), downloaded from more than 5000 patients around the world. Developing a mobile application has a cost, the current version does not contain all the functionalities due to mainly financial reasons, so we have chosen to develop it gradually according to the budget and the grants acquired. We would like to thank our financial partners (Ile De France Region, Crédit Agricole Foundation, Seine-Saint-Denis Department, Afnic Foundation, Fondation Malakoff Humanis, Pfizer, Global Blood Therapeutics), who helped us to develop the current version of the application. We still have many features to develop, many features that are useful for sickle cell patients and will help them manage the disease and improve their quality of life. So if you want to contribute to the realization of this project, do not hesitate, we need you, any help is welcome. We certainly have a common goal, and that is to improve the quality of life of patients. So let's do it together, JOIN US!