World Rare Disease Day - Bridging Health and Social Care

Highlights:

World Rare Disease Day is celebrated annually on the last day of February
Aims to raise awareness about rare diseases among the general public, policymakers and other stakeholders
The theme for 2019 is ‘Bridging Health and Social Care’
Over 7,000 rare diseases discovered so far and nearly 350 million people are affected by rare diseases worldwide

World Rare Disease Day is observed on the last day of February every year. It was first launched in 2008 by the European Organization for Rare Diseases (EURODIS) and its Council of National Alliances. In 2008, there were only 18 participating countries, which have increased to 93 countries in 2019.

World Rare Disease Day
World Rare Disease Day is marked on the last day of February each year to raise awareness about rare diseases.

‘World Rare Disease Day is celebrated on the last day of February every year. It aims to create more awareness about rare diseases among the general public, policymakers and other stakeholders.’
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World Rare Disease Day Theme for 2019: Bridging Health and Social Care

This year’s theme is ‘Bridging Health and Social Care’. It focuses on bridging the gaps in coordination between healthcare providers, social workers and support groups for collectively tackling the problems that patients with rare diseases and their families face every day.

On this day, hundreds of health organizations throughout the globe participate proactively to create awareness at the local, national, and international levels. Thousands of events are organized on this day that touches the lives of hundreds of thousands of people with rare diseases worldwide.

Blue Ribbon Art Exhibition and Film Festival World Rare Disease Day
The last day of February each year is marked as World Rare Diseases Day (WRDD) in honor of all people living with rare diseases.

Aims & Objectives of World Rare Disease Day

Its main aim is to raise awareness about rare diseases and their impact on patients’ lives among civil society and major decision makers and key stakeholders. These include policymakers, health professionals, researchers, health industry representatives, lawyers, public health authorities, and educationists.

Basics of Rare Diseases - Types, Diagnosis and Treatment
Rare or orphan diseases are least understood of all chronic diseases. They are more common than projected and kill more people than cancer and HIV together.

What is Rare Disease?

A rare disease is a disease that has low prevalence and affects a lesser number of people than other diseases in the general population. Statistically, a disease that occurs in less than 1 in 2,000 people is said to be a rare disease. It is a paradox that although rare diseases are of low prevalence and individually rare, they collectively affect a considerably large number of people, accounting for 6-8 percent of the population. It should be noted that most rare diseases are incurable and treatment is very costly.

There are a wide variety of rare diseases with a multitude of symptoms that vary not only between diseases but also between patients suffering from the same disease. Common symptoms may distort the underlying condition, which can lead to misdiagnosis and delayed treatment. Moreover, rare diseases may be chronic, progressive, proliferative, degenerative, and sometimes may even be life-threatening.

World Rare Disease Day 2017
The 10th annual Global Rare Disease Day is being celebrated each year on the last day of February. This year it is found to focus on the key theme being “Research.”

Rare Diseases: Facts & Figures

More than 7,000 rare diseases exist worldwide
Nearly 350 million people suffer from a rare disease globally
1 in 10 people are affected by a rare disease
80 percent of rare disease patients are affected by approximately 350 rare diseases
50 percent of rare diseases occur in children
3 in 10 children with a rare disease will not live to see their fifth birthday
80 percent of rare diseases are of genetic origin
20 percent of rare diseases are caused by infections, allergies, and environmental factors
8 years is the average time it takes a rare disease patient to receive an accurate diagnosis
95 percent of rare diseases lack a USFDA (United States Food and Drug Administration) approved treatment

Rare Diseases: The Indian Scenario

72-96 million people are affected by rare diseases in India
1 in 20 Indians suffer from a rare disease
450 rare diseases have been reported from India so far

Major Rare Diseases in India:

Hemophilia
Sickle-cell anemia
Thalassemia
Cystic fibrosis
Duchenne muscular dystrophy
Autoimmune diseases
Pompe disease
Hirschsprung’s disease
Gaucher’s disease
Multiple sclerosis
Ataxia telangiectasia
Down syndrome
Sjögren’s syndrome
Cushing’s syndrome

Major Indian Initiatives and Support Groups:

Birth Defects Registry of India
Metabolic Errors and Rare Diseases Organization
Hemophilia Foundation
Pompe Foundation
Lysosomal Storage Disorders Support Society
Muscular Dystrophy Foundation
Sjögren’s India
Alzheimer’s and Related Disorders Society of India
Association of Persons with Rare Eye Diseases

Roadblocks Towards Progress

Insufficient awareness and advocacy about rare diseases
Lack of public health policies concerning rare diseases
Want of legislation to check high drug prices
Absence of quality healthcare facilities catering to rare diseases
Inadequate basic, applied and epidemiological research
Gaps in knowledge and paucity of accurate information

The Way Forward

Awareness & Advocacy: More awareness needs to be generated, along with increased advocacy efforts about the needs of patients suffering from rare diseases. The annual ‘World Rare Disease Day’ has been instrumental in this regard
Health Policies: Evidence-based public health policies should be framed to prioritize rare diseases at the national level and align the national agenda with the international agenda on rare diseases
Legislation: Legislations are required to lower drug prices and promote the manufacture of cheap generic drugs for rare diseases. For example, the Indian Drugs & Cosmetics Act should be amended to include drugs for rare diseases, which will help to bring down drug prices. Also, an ‘Orphan Drug Act’ should be passed by the Indian Parliament, which will expedite drug development
Health Infrastructure: Specialized health infrastructure dedicated to the diagnosis and treatment of rare diseases should be established in the form of National Centers of Excellence (CoE)
Research & Innovation: More scientific and clinical research should be encouraged to develop new diagnostics and therapies for rare diseases. Public-Private Partnerships (PPP) will help to generate innovation in R&D
Knowledge Base: More knowledge needs to be generated through high-quality research for creating a national database that will be a repository for accurate and comprehensive information on rare diseases

On this World Rare Disease Day, along with the hundreds of health organizations, let us come together to create awareness at the local, national, and international levels to touch the lives of hundreds of thousands of people suffering from rare diseases.

References:

Rare Disease Day® - (https://www.rarediseaseday.org/article/what-is-rare-disease-day)
National Organization for Rare Disorders (NORD®) - (https://rarediseases.org/rare-disease-day/)
Global Genes® - (https://globalgenes.org/world-rare-disease-day/)
European Reference Network for Rare or Low Prevalence Complex Diseases - (https://ern-euro-nmd.eu/event/rare-disease-day-2019/)
National Policy for Treatment of Rare Diseases, Ministry of Health & Family Welfare, Government of India - (https://mohfw.gov.in/sites/default/files/Rare%20Diseases%20Policy%20FINAL.pdf)
Organization for Rare Diseases India (ORD India) - (https://ordindia.org/)

Source-Medindia