Our work
At INDEPF, we are dedicated to providing comprehensive support to people with rare diseases and their families. We believe that everyone deserves access to healthcare and the resources needed to live a fulfilling life, and we work tirelessly to make this a reality
Our work is divided into several key areas, each of which focuses on supporting rare disease patients in different ways. Below is a detailed description of each of these areas:
Social area
We work to promote the social incluson of patients with rare diseases and privide information, guidance, and social resource management for patients and their families. We offer support and resource management for associations and provide accommodation for families with and without a diagnosis. We also provide emotional support during the process of assimilation of the disease and/or grief, assist in the request and management of disability certificates and dependency law, as well as the creation of guides on economic and social benefits. We also seek sources of funding and develop projects to raise funds and grants, coordinate and refer patients to reference units, and organize workshops and talks. Additionally, we are responsible for coordinating, evaluating, monitoring, and justifying social projects
Psychological area
We offer emotional support and active listening to patients, families, and caregivers during their experience with rare diseases. We analyze their needs and provide them with resources and tools to cope with the daily consequences of the condition. We work together with them to establish goals focused on improving their quality of life and well-being. We help patients identify and manage their emotions, develop coping skills, and improve their communication and social relationships. We also coordinate with internal and external professionals to ensure comprehensive care. We provide a safe and confidential space for them to freely discuss their problems and needs
Educational area
We focus on providing educational support to children with rare diseases who have learning difficulties. Our goal is to help them develop their potential in a tolerant and understanding environment. We work in essential areas such as reading, writing, mathematics, logical reasoning, among others, all from a personalized perspective adapted to the needs of each child. We also focus on preventing, identifying, and intervening as early as possible in learning difficulties and supporting cases of dyslexia, dysgraphia, dysorthography, and dyscalculia. We use effective teaching strategies to prevent and correct learning difficulties, as well as to encourage the learning of intellectual work techniques that help children in planning, organizing, and structuring content
Area of new technologies
We offer the creation of websites, design and editing of informational and awareness campaigns (posters, brochures, roll-ups, photocalls, etc.), as well as corporate image design for Rare Disease Associations. With this service, we aim to provide coverage and support to small associations that want to grow and make themselves known
Legal and advisory area
Thanks to the formal agreement we have with the ProBono Foundation, we offer civil, criminal, labor, and administrative legal advice to patients, families, and organizations, as well as representation in all kinds of legal proceedings, including civil, criminal, labor, and commercial cases. The ProBono Foundation is made up of legal professionals who are available to handle legal issues and refer them to specialized centers for specific legal matters
Institutional area
At INDEPF we organize institutional events and meeting for important projects, inviting relevant personalities with a specific objetive according to the type of event