The Social Integration Challenges for the Population with Rare Diseases

Rare illnesses affect people of all ages across the world. Patients, families, and caregivers have many unmet medical and social requirements, resulting in significant mental and financial hardships. Efforts to enhance diagnostic skills and create medicines for an estimated 7000 uncommon illnesses have been very successful. In the United States, a rare illness or condition affects less than 200,000 persons. In the European Union (EU), a rare illness is defined as one that affects fewer than five persons in every 10,000. However, no effective medicines exist for 90% of uncommon disorders. There is a need to increase awareness, advocacy, and outreach to everyone, especially those with low incomes, low literacy, minority ethnic status, and living in underserved and marginalized communities in urban and rural regions, as well as developing countries throughout the globe. The acceptance of patients as research partners complements greater research focus and large regulatory activities, which contribute to faster review and approval programs for goods for severe or life-threatening disorders. The social challenges and lack of recognition of these illnesses cause the patients and their families facing the server difficulties when they try to get treatments, job opportunities, or engage in society. This paper aims to analyze the problem with various research and resources, which seeks to raise awareness of the rare disease population and bring more benefits and help to them.