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In shared decision-making, patients and clinicians work together to make care decisions. This method of care is ethically desirable and practically feasible and may be effective in making care fit: forming plans of care that maximally respond to the patient’s situation and priorities while minimally disrupting their lives.
Rare diseases remain a formidable public health challenge. The key to unlocking breakthroughs in diagnosis and treatment is fostering dynamic international partnerships and streamlined data sharing. The empowerment of patient advocacy groups is essential, as they are pivotal in driving innovative research and elevating health-care standards for these often under-represented conditions.
