It may not be widely known, but for the last thirteen years, the last day of February has been Rare Diseases Day – and Sunday February 28th, 2021 will continue that tradition, both around the globe in the physical world and in Second Life.
Approximately that one in every 20 people suffering with one or more of over 6,000 of the currently identified rare diseases, with the overall impact of such diseases impacting the lives of between 3.5% and 5.9% of the worldwide population.
Roughly 72% of these diseases are genetic in nature, with 70% of such diseases starting at childbirth or during childhood, whilst the remain 28% of rare diseases are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
Often diagnosis of such a disease can be complicated by the fact they can be hidden by relatively common symptoms, thus delaying what can be vital treatment. Many are quintessentially disabling, dramatically impacting the patients quality of life as a result of the often chronic, progressive, degenerative, and frequently life-threatening aspects of such a disease.
Treatment is made more complicated for a variety of reasons, such the lack of scientific knowledge and quality information on a particular disease; the lack of appropriate quality health care, or lack of access to treatment and care; and / or the fact that symptoms can vary between patients suffering from the same disease.
Given all this, Rare Diseases Day encompasses two aims. The first is to raise awareness amongst the general public and policy makers, public authorities, industry representatives, researchers, health professionals about rare diseases and their impact on patients’ lives.
The second is to achieve equitable access to the diagnosis, treatment, health and social care for those affected by a rare disease and to ensure that have access to equal social and work opportunities.
Initially European-centric, Rare Diseases Day has grown to a world-wide event, with oner 100 countries participating in 2020, with thousands of individual events organised at the local level.
Within Second Life, three core events will be taking place on February 28th tied to Rare Diseases Day:
- Midnight SLT, on Saturday, February 27th through Midnight SLT on Sunday, February 28th: a mix of live performers and DJS on stage at the Rare Diseases Day music event. Details of those performing are available at the event and in the panel on the right.
- 10:00 SLT: Research Pavilion, Healthinfo Island – Congenital Heart Defect Awareness, presented by Gentle Heron (February is also Heart Health Month).
- 12:00 noon SLT: a discussion at the Rare Diseases exhibition presented by the Community Virtual Library (CVL) in association with the Conrado F. Asenjo Library at the University of Puerto Rico, to be followed by a trip to the Rare Disease Day music event.