At the heart of HARSO’s activities are the rare disease associations. We provide support services and training for our member associations and promote the affairs of the people living with a rare disease and disability in Finland and internationally.
What we do?
The power of networks
We strive to strengthen the cohesion and unity of rare actors in Finland. Our task is to support the continuation and development of the activities of rare patient associations. This way, we can highlight the positive power of cooperation among rare patients.
We also operate internationally. HARSO is a full member of EURORDIS, the European alliance of rare disease patient organisations. In addition, we work closely with other Nordic umbrella organizations.
We promote the social status of people living with rare diaseases and disabilities. We aim to prevent social isolation and support inclusion and equality of people with rare diseases and disabilities.
The status of rare diseases and disabilities needs to be strengthened, especially in public health care. We aim to ensure that the bureaucracy of the social and health care system does not slow down the path of care and jeopardize protection under the law and sovereignty of the rare patient. By speeding up the path to diagnosis and improving access to care, we are reducing the cost of rare diseases and disabilities to society.
Having been diagnosed with rare disease or disability, the need for information is often great, but little information is available. Often, the shared experience of a disease or disability among peers adds to the experience of being understood and heard. Regardless of diagnosis, many rare patients and people with disabilities have similar experiences in areas such as diagnosis, treatment, rehabilitation, and numerous social services.
Many of our member associations offer peer support services. We will be happy to help you find a suitable association or guide you through setting up a completely new association.
The voice of experience
Only a person with a rare disease or a disability knows what it is like to live with a rare condition. It is therefore important that the rare patient and his or her experience are taken into account in all decision-making and development work, both in health and social services.
We train patients and their close relatives to share rare knowledge and increase understanding regionally, nationally and internationally as representatives of patients’ associations.
Person with a rare disease or disability is often the best expert of their disease and treatment options. Therefore, e.g. when making treatment decisions about a rare disease, the patient should be heard from the outset. Patient experiences should also be taken into account when developing orphan drugs.