Did you know that 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.
Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people. On Monday February 24th 2020, Karla was proud to support Lisette Kingo and The Angel Project at City Hall as Lisette received the Proclamation for Rare Disease Day from the City Of Burlington. Lisette continues everyday to fight and is a voice for those living with Rare Disease.
- There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world, 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.
What is The Angel Project?
Founded in 2008 by Lisette Kingo. Many patients spend decades in Complex Care units in hospitals and will never go home again; accident victims, MS, ALS patients and others who have been left without tools and the finances to fend for themselves and have been abandoned by their families and society. Hospital foundations have such a large need to fill that Complex Care units are often left to the last. The Angel Project prides themselves on being one of the very few organizations that operate with minimal overhead, and a volunteer team including board of directors. The majority of funds raised through website donations (www.theangelproject.ca) or various fundraising events, go directly to patients or the Complex Care Unit at the hospital. At The Angel Project, they not only raise funds to assist in at least one outing per eligible patient per year, when possible they assist with the purchase of items such as wheelchairs, voice boxes and speech computers. Although there is some provincial funding for these, it is not enough for patients who do not have enough to cover the patient portion. The wait for provincial funding is also excruciating. They assist with basic needs such as providing soap, shaving cream, shampoo and even simple comforts such as stuffed animals, soft blankets or gifts at Christmas. Complex Care Patients at Joe Brant Hospital (Burlington) and Parkwood Hospital (London) depend on the funds The Angel Project raises through their local fundraising events and private donations.