rare disease awareness day

Rare Disease Day is held on February 28 every month to spread rare disease awareness worldwide. By observing this day, people worldwide would get a chance to discuss rare diseases.

By giving presentations on rare diseases, there can be improved access to medical treatment, and people worldwide know about the disease’s symptoms.

They could also develop empathetic skills and tolerance towards those suffering from rare diseases. National Rare Disease Day is also developed so that there can be an idea of how many and what kind of rare diseases people are suffering from.

On April 11, 2009, Rare Disease Day took a global turn when the National Organization for Rare Disorders mobilized 200 patient advocacy organizations across America; organizations in China, Australia, Taiwan, and Latin America also coordinated activities and promoted activities awareness around this day.

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How do Rare Diseases affect People?

Rare diseases are chronic, progressive, debilitating, disabling, and often life-threatening. Unfortunately, information and research are scarce, and affected people face challenges such as diagnosis delay, misdiagnosis, psychological burden, and lack of practical support. Unfortunately, many rare disease sufferers do not enjoy the highest attainable standard of health and must fight to overcome common obstacles.

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Different Activities Conducted around the world on Rare Disease Day:

1. In 2018, 80 nations participated, and new countries like Togo, Cape Verde, Trinidad, Syria, Togo, Ghana, and Tobago participated for the first time.

2. In the year 2014, 84 countries participated, with 400 events worldwide. Understanding the importance of the day, 9 new countries also participated. The new countries are Paraguay, Cuba, Kenya, Oman, Jordan, Egypt, Kazakhstan, Guinea, and Ecuador.

3. By 2012 thousands of patient advocacy organizations had joined, including more than 600 partners working with NORD (National Organization for Rare Disorders) to promote Rare Disease Day throughout America.

4. By 2011, 46 nations had taken part in this global event.

5. In 2010, 46 countries participated, including Latvia, Lithuania, Slovenia, Georgia, and three African states that joined for the first time.

6. In 2009, Rare Disease Day was observed for the first time in Russia, Panama, Argentina, Columbia, and Serbia.

7. On February 29, 2008, the European Organisation for Rare Diseases (EURORDIS) organized the inaugural Rare Disease Day across numerous European nations and Canada through the Canadian Organization for Rare Disorders.

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The Main objective of Rare Disease Awareness Day is:

a) To get equity in access to treatment and care for all the patients suffering from rare diseases.

b) To educate people worldwide about the different kinds of rare diseases to increase their understanding and patience towards the people suffering from these rare diseases.

c) To give hope and confidence to the patients that they are not alone.

d) To raise awareness worldwide on different kinds of rare diseases.

e) To bring all the stakeholders in one place.

f) It is also to coordinate policy actions in different countries.

g) To do research and gather some information related to these rare diseases

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Problems Faced by People suffering from Rare Diseases:

1. The chances of accurate diagnosis are less since it is a rare disease.

2. The treatment options would be limited, and sometimes, there would not be any treatment to do immediately.

3. There will be no previous research reports or case studies to start immediately and help the patient.

4. There could be difficulty in finding a specialist who can treat this particular rare disease.

5. With no fixed treatment and trials, medicine to cure the disease could be expensive.

6. Since it is a rare disease, the possibility of getting insurance or reimbursement would be zero.

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How can we help people suffering from Rare Diseases?

1. We can be empathetic toward the suffering.

2. We should understand and educate people about these rare diseases and how we can support them morally.

3. We can collect finances from different sources to help the patients undergo treatment.

4. We should give hope and confidence to the patient and the family that they can overcome this together.

5. Conducting various activities with different case studies helps people understand these rare diseases.

6. Conducting different events where people suffering from rare diseases gather at one place and share their feelings so that it would be helpful for others suffering from rare diseases.

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By Admin

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