World Rare Disease Day: End Stigma Against Rare Diseases.

Celebrating World Rare Disease Day will create awareness and encourage patients to seek medical help on time to manage their condition.

World Rare Disease Day takes place on 28th February every year. It is celebrated to raise awareness among the public about the rare diseases and their impact on patient's lives. Rare disease is often described as debilitating lifelong disease or disorder with a prevalence of 1 or less, per 1000 population.

The European Organisation for Rare Diseases (EURORDIS) organized the first Rare Disease Day, which took place on February 29, 2008 a ‘rare’ date that happens only once every four years. According to the organization, there has never been a day dedicated to representing those affected by rare diseases. 

Theme:

The theme of this year is "Share Your Colours". This theme appeals to people who are living with a rare disease to share their stories and struggles and encourage everyone to come together and spread awareness.

Significance:

Rare Disease Day increases awareness in public about the rare disease and motivate researchers and policymakers to attend to the needs of people who are affected by rare diseases. Since the most of rare disease are incurable and because of lack of awareness many people go undiagnosed.

Rare diseases:

Rare diseases include rare cancers, autoimmune diseases, congenital malformations, and infectious diseases amongst others. As there is no epidemiological data, only 450 rare diseases have been recorded in India from tertiary care hospitals. Rare diseases that are reported are Primary immunodeficiency disorders, Lysosomal storage disorders (Gaucher’s disease, Mucopolysaccharidoses, Pompe disease, fabry disease etc.) Cystic Fibrosis, osteogenesis imperfecta, certain forms of muscular dystrophies and spinal muscular atrophy, etc.

Rare Disease Day participants hold events, gatherings, and campaigns like press conferences, fundraising events, participating in walks. These events are held to encourage social change and bring attention to decision-makers.

Tags : #editorspick #worldrarediseaseday #rarediseaseday #chronicillness #rarediseaseawareness #chronicpain #rare #awareness #smitakumar #medicircle

Related Stories

Loading Please wait...

-Advertisements-




Trending Now

EV Conference 24---Charging Up for e-mobility Minister Ponnam Prabhakar and Jayesh Ranjan among others to graceJune 14, 2024
Are we on track to end AIDS, end viral hepatitis and end STIs by 2030?June 14, 2024
HR Conclave Focusing on Future-Forward Engineering where Engineering and Management students meet their future employees, thus exposing students to real-world HR challenges and innovative solutionsJune 14, 2024
MAGGI Empowers 10 Women to Bring their Entrepreneurial dreams to lifeJune 13, 2024
FTCCI announced its Annual Excellence Awards and invites entries, last date is 20th June 2024June 13, 2024
Bird Flu Cases by Dr Praveen Gupta, Principle Director and Chief of Neurology, Fortis Hospital.June 13, 2024
Sova Health's $1 Million Seed Funding to Drive Gut Health InnovationJune 13, 2024
The Vital Role of Early Detection: Kevin Jonas on Battling Skin CancerJune 13, 2024
Zumutor Biologics Advances Cancer Care with Novel Immunotherapy ZM008: A First-in-Class Anti LLT1 AntibodyJune 13, 2024
HP Ghosh Hospital Unveils Innovative "Chest Tree" June 12, 2024
Olympus Enhances Innovation Capabilities by Expanding R&D to Hyderabad, IndiaJune 12, 2024
From the frontlines: Homeless person won over alcoholism, survived floods and defeated TBJune 12, 2024
The Role of Hormones in Obesity: Why Men and Women Gain Weight DifferentlyJune 12, 2024
Silent Killer: How a Young Mother’s Vision Loss Led to a Lung Cancer DiagnosisJune 12, 2024
TruAlt Bioenergy’s subsidiary, Leafiniti Bioenergy supplies over 1000 tons of Compressed Biogas to AG&P Pratham in just 5 monthsJune 11, 2024
Southeast Asia's Most Advanced Luxury Postpartum Centre Re'Joy Suites Opens in SingaporeJune 11, 2024
Poor Muscle Health in Obesity Can be A Major Risk Factor for Early DeathJune 11, 2024
Machine Learning Uncovers How Organ Ageing Impacts Health and LongevityJune 11, 2024
Why Education is Essential for Health and LongevityJune 11, 2024
New Study Reveals Antidepressant Withdrawal Symptoms Less Common but Still SignificantJune 10, 2024