Observed annually on the last day of February, Rare Disease Day is the official international awareness-raising campaign for rare diseases. Nutrix Personnel are eager to play their part in contributing to the primary goal of increasing awareness among the public about rare diseases and their influence on the lives of families living with them.
This Thursday the 29th of February, our team will be joining thousands of others across the country to #ShareYourColours in support of the 300 million people globally living with a rare disease. There are around 6000+ rare diseases to account for that lack accurate diagnosis treatment, care, and equitable social opportunities.
The History Behind Rare Disease Day
The first Rare Disease Day took place in 2008 with events taking place across 18 different countries. Created by the European Organisation for Rare Diseases (EURORDIS) and its Council of National Alliances, the number of participating countries has grown annually. In fact, over 100 countries have participated since 2008 with thousands of events now occurring on all continents in or around February.
What is a Rare Disease?
A rare disease, or orphan disease, is a term used to describe a disease that affects only a small percentage of the population. They are characterised by a diverse range of symptoms and signs that vary not only from patient to patient, but also from disease to disease. Often, those suffering from a rare disease can be denied diagnosis or treatment because of the relatively rare, or scare, amount of medical research.
In many cases, misdiagnosis or delayed treatment can occur because of misleading symptoms. On average, it takes 5 years for rare disease patients to get a diagnosis. This can affect, or even disable, the quality of life of the person living with the rare disease because of chronic, progressive, degenerative, and life-threatening aspects of the disease.
In addition to this, the lack of existing and effective cures results in patients and their families suffering from a high level of pain. Rare diseases don’t just affect the person who is diagnosed but also family, friends, and even carers. 7 in 10 people living with rare diseases, as well as family carers, reduce or stop professional activity due to their, or their family member’s, rare disease.
How Nutrix Personnel are supporting Rare Disease’s Day 2024
Our homecare team take great pride in offering experienced and compassionate carers to families across the United Kingdom who suffer from a rare disease. All our staff play a vital role in providing holistic care and support to those combatting the challenges of a rare disease. Through offering both medical expertise and emotional support, they ensure that patients receive the highest quality care post-diagnosis.
By joining forces with Rare Disease Day, we’re hoping to raise awareness about the severity of rare diseases and show our support for the 300 million people worldwide that live with one. It’s the ambition of EURORDIS to encourage policymakers to provide people living with a rare disease with equitable access to diagnosis, treatment, and care. By sharing crucial rare disease statistics and emphasising the importance of appropriate care, Nutrix Personnel are confident in creating a lasting difference.
Get Involved and Share Your Colours
It’s easy to get involved with Rare Disease Day and we’d love to see our staff and clients join us in spreading the word. There are also plenty of events taking place across the country that you can attend to find out more about rare diseases or simply show your support. Regardless of how you get involved, be sure to share your photos online by using the official hashtag #RareDiseaseDay and tagging @nutrixpersonnel.
