Rare diseases are diseases that occur in less than 5 people per 10,000 inhabitants. On average, it takes 5 years for a person suffering from a rare disease to receive a correct diagnosis.
The time that passes until the correct diagnosis is a period full of uncertainty, anxiety, anger and frustration for many people, as well as their family members.
Many people living with a rare liver disease diagnosis feel isolated and left out. Many feel discrimination, exclusion, stigma at the workplace, school or in social situations, and this is especially felt by those who do not have visible symptoms that vary from day to day.
Lack of information, lack of experts in the health system, but also lack of understanding from friends and peers leaves a feeling of isolation.
Living with a rare liver disease is complex and challenging. It is a life filled with resilience, strength, hope, gratitude, but also joy.
Croatian Rare Liver Foundation was founded with the purpose of providing support to people suffering from rare liver diseases.
Our vision is a world without liver disease.
Our mission is to change lives and create a healthier future for people with rare liver diseases and their families. We want to create a community that provides hope, understanding and security where every person suffering from a rare liver disease has a chance to live a quality life.
Through available information, education, support groups, education of experts, we want to provide people suffering from rare liver diseases with security, understanding and hope for the future. We want no one to feel isolated, left out and invisible.
The purpose of the Foundation:
- providing information on rare liver diseases, liver cancer and liver transplantation;
- providing support to patients with rare liver diseases and their family members, including liver cancer patients;
- raising awareness of rare liver diseases including liver cancer;
- advocating for early detection of liver disease;
- representing the interests of patients with rare liver diseases, liver cancer and liver transplant patients;
- raising awareness of liver transplantation as a form of treatment, providing support to liver transplant patients, advocating for an increase in the quality of life after liver transplantation;
- advocating for the advancement of healthcare in the treatment of rare liver diseases, liver cancer and post-liver transplant care.
Activities by which the Foundation achieves its purpose:
- informing the public about the activities and purpose of the Foundation;
- organization of public events, gatherings, educations, charity events and dinners;
- publishing and advertising activities;
- fundraising activities to ensure financing of the Foundation’s activities;
- implementation of research and development projects;
- cooperation with scientific research and health organizations from the country and abroad to improve the treatment of rare liver diseases, liver cancer and in the field of liver transplantation;
- cooperation with other non-profit organizations that operate in the field of improving the health care of patients suffering from rare liver diseases and other diseases, and generally improving the health of citizens;
- other activities for the purpose of promoting the purpose of the Foundation and acquiring assets that contribute to the achievement of the purpose for which the Foundation was established.