Rare Diseases Day

๐—” ๐—ฟ๐—ฎ๐—ฟ๐—ฒ ๐—ฑ๐—ถ๐˜€๐—ฒ๐—ฎ๐˜€๐—ฒ ๐—ถ๐˜€ ๐—ฑ๐—ฒ๐—ณ๐—ถ๐—ป๐—ฒ๐—ฑ ๐—ฎ๐˜€ ๐—ฎ ๐—ฑ๐—ถ๐˜€๐—ฒ๐—ฎ๐˜€๐—ฒ ๐˜๐—ต๐—ฎ๐˜ ๐—ถ๐˜€ ๐—น๐—ถ๐—ณ๐—ฒ ๐˜๐—ต๐—ฟ๐—ฒ๐—ฎ๐˜๐—ฒ๐—ป๐—ถ๐—ป๐—ด, ๐—ฐ๐—ต๐—ฟ๐—ผ๐—ป๐—ถ๐—ฐ๐—ฎ๐—น๐—น๐˜† ๐—ฑ๐—ฒ๐—ฏ๐—ถ๐—น๐—ถ๐˜๐—ฎ๐˜๐—ถ๐—ป๐—ด ๐—ฎ๐—ป๐—ฑ ๐—ผ๐—ณ ๐—น๐—ผ๐˜„ ๐—ฝ๐—ฟ๐—ฒ๐˜ƒ๐—ฎ๐—น๐—ฒ๐—ป๐—ฐ๐—ฒ (๐—ณ๐—ฒ๐˜„๐—ฒ๐—ฟ ๐˜๐—ต๐—ฎ๐—ป ๐—ณ๐—ถ๐˜ƒ๐—ฒ ๐—ฐ๐—ฎ๐˜€๐—ฒ๐˜€ ๐—ฝ๐—ฒ๐—ฟ ๐Ÿญ๐Ÿฌ,๐Ÿฌ๐Ÿฌ๐Ÿฌ ๐—ฝ๐—ฒ๐—ผ๐—ฝ๐—น๐—ฒ)
With over 7,000 rare diseases affecting approximately 3.5 – 5.9% of the global population, an estimated 300 million people worldwide are impacted, including around 50 million individuals in Africa.
Rare Diseases can be of genetic origin, but also include metabolic disorders, infectious diseases, autoimmune conditions, and rare cancers. They are often disabling, significantly affecting a person’s quality of life due to their chronic, progressive, degenerative, and often life-threatening nature.
Rare Diseases Day, observed annually on February 28 (or February 29 in leap years) is a global movement to advocate for equitable access to healthcare, diagnosis & treatment for individuals living with rare diseases. The theme for this year is “๐— ๐—ผ๐—ฟ๐—ฒ ๐˜๐—ต๐—ฎ๐—ป ๐˜†๐—ผ๐˜‚ ๐—ฐ๐—ฎ๐—ป ๐—ถ๐—บ๐—ฎ๐—ด๐—ถ๐—ป๐—ฒ; ๐—ฎ๐—ป ๐—ฎ๐—ป๐˜๐—ต๐—ผ๐—น๐—ผ๐—ด๐˜† ๐—ผ๐—ณ ๐—ฟ๐—ฎ๐—ฟ๐—ฒ ๐—ฒ๐˜…๐—ฝ๐—ฒ๐—ฟ๐—ถ๐—ฒ๐—ป๐—ฐ๐—ฒ๐˜€” which is a call to highlight the unique challenges, resilience & untold experiences of people living with ย Rare Diseases.
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Key challenges in addressing Rare Diseases include:
โœ… Limited Data and Research, hindering disease recognition and treatment development.
โœ… Diagnostic difficulties, with many conditions going unrecognized or Misdiagnosed
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Despite these barriers, advancements in genomic medicine, particularly Next Generation Sequencing offer hope for improved Diagnostic capabilities. However, greater investment in Research, Healthcare Infrastructure, and Policy Advocacy is necessary to ensure equitable healthcare access for individuals with Rare Diseases, especially in underserved regions
Experts emphasize the need for global and regional policies that prioritize increased awareness, inclusion, equitable access to healthcare for marginalized populations and stronger policy support for individuals affected by Rare Diseases
๐™๐™ค๐™œ๐™š๐™ฉ๐™๐™š๐™ง, ๐™ฌ๐™š ๐™˜๐™–๐™ฃ ๐™ข๐™–๐™ ๐™š ๐™– ๐™™๐™ž๐™›๐™›๐™š๐™ง๐™š๐™ฃ๐™˜๐™š!

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