RARE DISEASE DAY

Rare Disease Day

Every year, on the last day of February, the world comes together to observe Rare Disease Day, a day dedicated to raising awareness about rare diseases and the challenges faced by those living with them. An opportunity to unite in solidarity with the millions of people around the world who are affected by rare diseases.

What Is Rare Disease?

Also known as an orphan disease, it is a condition that affects a small percentage of the population. In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. In Europe, a rare disease is defined as a condition that affects fewer than 1 in 2,000 people. 

With a combined population of less than 400 million, The Center of Arab Genomic Studies estimates about 2.8 million patients are suffering from a rare disease in the Middle East. The region has one of the highest prevalence rates in the world for rare diseases, especially  genetic diseases. There are over 7,000 known rare diseases, and new ones are being discovered every year. Many of these diseases are genetic, meaning they are caused by changes in a person’s DNA.

What is Rare Disease

 

Living With A Rare Disease

Having a rare disease can be a challenging and an isolating experience. Many people with rare diseases struggle to get an accurate diagnosis, as their condition is unknown to many doctors. Treatment options for rare diseases can be limited, and many people with rare diseases may not have access to the care they need. The high cost of treatments and medications can also be a barrier for many people.

In addition to the physical challenges of living with a rare disease, many people with rare diseases face social and emotional challenges as well. They may feel isolated and alone, as few people can truly understand what they are going through. Many people with rare diseases also face stigma and discrimination, as their condition may be misunderstood or unknown to others.

Living With A Rare Disease

 

Raising Awareness 

Rare Disease Day is an important opportunity to raise awareness about rare diseases and to show support for those affected by them. By increasing public awareness about rare diseases, we can help to reduce stigma and discrimination and improve access to care for those living with these conditions. We can also encourage governments, researchers, and healthcare providers to invest in rare disease research and to develop new treatments and cures.

This also serves as a reminder that while rare diseases may be rare, they affect millions of people around the world. By coming together on this day, we can show our support for those living with rare diseases and let them know that they are not alone. If you or someone you know is living with a rare disease  there are many resources available to help. Organisations such as the National Organization for Rare Disorders (NORD) and the Global Genes Project provide support, education, and advocacy for people with rare diseases and their families.

Raising Awareness

 

How Should We Help?

Rare Disease Day is an important opportunity to 

  1. Raise awareness about rare diseases 
  2. To show support for those living with these conditions 
  3. By increasing public awareness about rare diseases, we can help to reduce stigma and discrimination. 

We can improve access to care for those living with these conditions. 

By coming together on this day, we can show our support for those living with rare diseases and let them know that they are not alone.

How should we help

 

Role Of Pharma Solutions

As a company focusing on development in healthcare, we at Pharma Solutions, bring innovative pharmaceutical brands into the market while also endeavouring to impart the best healthcare support for patients. Pharma Solutions started with a mission to bring in products which aid in treating critical, infectious,and rare diseases such as Thalassemia, Hepatitis B & C, Cancer, amongst others. 

We aim to bridge the gap between affordability and availability, and patients’ requirements of pharmaceuticals by enabling emergency handling, licensing, marketing, licensing, promotion, and distribution of drugs approved by FDA and EMEA. With tie-ups with pharmaceutical companies such as MDI, Vianex, Helsinn and others, we intend to make critical care, autoimmune and rare diseases drugs affordable and available to a wider spectrum of people. To know more about our operations. Visit: https://www.pharmasolutions-int.com/

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