Empowerment through navigation, advocacy and engagement is what we aim to achieve in our day to day objectives.
Patient navigation is a process by which an individual—a patient navigator—guides patients from presentation of symptoms to end of life care, through and around barriers, in the complex healthcare system to help ensure timely diagnosis and treatment.
Patient advocacy can be defined as a professional/organization who provides services to patients, and those supporting them, who are navigating the complex healthcare continuum. Patient advocates work directly with patients to ensure they have a voice in their care and information to promote informed decision making. Patient advocates may work independently or in medical or other organizational settings, and serve individuals, communities, disease‐specific populations, as well as family caregivers.
Taking together, all of this information, Rare Diseases SA aims to:
Provides services to patients as they navigate the healthcare system,
Work directly with patients to ensure that they have a voice in their care,
Work to make sure that patients have sufficient information to promote informed decision making,
Plays an informational role,
Remain committed to helping patients make informed choices and access resources,
Ensures that a patient’s wishes are the guiding force behind decisions affecting medical care and the withholding of care, and
Collaborate effectively with other members of the healthcare team.
RDSA does not recommend specific treatment choices, provide clinical opinions, or perform medical care of any type.
Community engagement within the rare disease community is important to ensure patients are better supported. The feeling of being isolated and abandoned is synonymous with rare diseases, and RDSA aims to overcome this by creating awareness and platforms in which our community can connect and support one another.