Now, due to the COVID 19 pandemic, I will recreate this event in Second Life.
On Sunday, February 28th, 2021 from midnight SLT until Monday, March 1st, 2021 midnight SLT, we will have live artists and DJs playing live on our venue
http://maps.secondlife.com/secondlife/Tainted%20Island/156/206/2004
What is Rare Disease Day? https://www.rarediseaseday.org/article/what-is-rare-disease-day
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
The campaign targets primarily the general public and also seeks to raise awareness amongst policymakers, public authorities, industry representatives, researchers, health professionals, and anyone who has a genuine interest in rare diseases.
Why is Rare Disease Day held each year? https://www.rarediseaseday.org/article/what-is-rare-disease-day
Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision-makers to address the needs of those living with rare diseases.
Key figures about rare diseases: https://www.rarediseaseday.org/article/what-is-a-rare-disease
There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world1, each supported by family, friends, and a team of carers that make up the rare disease community.
Each rare disease may only affect a handful of people, scattered around the world, but taken together the number of people directly affected is equivalent to the population of the world’s third-largest country.
Rare diseases currently affect 3.5% - 5.9% of the worldwide population.
72% of rare diseases are genetic whilst others are the result of infections (bacterial or viral), allergies, and environmental causes, or are degenerative and proliferative.
70% of those genetic rare diseases start in childhood.
A disease defined as rare in Europe when it affects fewer than 1 in 2,000 people.
Characteristics of rare diseases
Over 6000 rare diseases are characterized by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease.
Relatively common symptoms can hide underlying rare diseases leading to misdiagnosis and delaying treatment. Quintessentially disabling, the patient's quality of life is affected by the lack or loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.
The fact that there are often no existing effective cures adds to the high level of pain and suffering endured by patients and their families.
Common challenges
The lack of scientific knowledge and quality information on the disease often results in a delay in diagnosis. Also, the need for appropriate quality health care engenders inequalities and difficulties in access to treatment and care. This often results in heavy social and financial burdens on patients.
As mentioned, due to the broad diversity of disorders and relatively common symptoms which can hide underlying rare diseases, initial misdiagnosis is common. In addition, symptoms differ not only from disease to disease but also from patient to patient suffering from the same disease.
Due to the rarity and diversity of rare diseases, research needs to be international to ensure that experts, researchers, and clinicians are connected, that clinical trials are multinational, and that patients can benefit from the pooling of resources across borders. Initiatives such as the European Reference Networks (networks of centers of expertise and healthcare providers that facilitate cross-border research and healthcare), the International Rare Disease Research Consortium, and the EU Framework Programme for Research and Innovation Horizon 2020 support international, connected research.
How can Rare Disease Day make a difference?
Rare Disease Day raises awareness for the 300 million people living with the rare disease around the world and their families and carers.
The long-term cause of the Rare Disease Day campaign is to achieve equitable access to diagnosis, treatment, health and social care, and social opportunity for people affected by a rare disease.
Important progress continues to be made with joint international advocacy efforts for universal health coverage (UHC), part of the United Nations Sustainable Development Goals (SGDs) to advocate for equitable health systems that meet the needs of people affected by rare diseases in order to leave no one behind.
Rare Disease Day is the opportunity to advocate for rare diseases as a human rights priority at local, national, and international levels as we work towards a more inclusive society.
Rare Disease Day is a great example of how progress continues to be made, with events being held worldwide each year. Beginning in 2008, when events took place in just 18 countries, Rare Disease Day has taken place every year since with events being held in over 100 countries in 2019.
We hope to see you at our event for Rare Disease Day in Second Life on Sunday, February 28th, 2021!
Wesley Regenbogen
No comments:
Post a Comment