Keratoconus Group | Support Community and Blog

Rare Disease Day 2020

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.

Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. the first Rare Disease Day was held on February 28, 2008, the date was chosen because February 29 is a rare day.

Rare diseases affect an estimated 300 million people around the world. There are over 6000 different diseases, so rare is not so rare after all. Support the rare disease community by spreading the word. With your help, we can raise awareness and increase support for research.

Rare Disease Day 2020

The theme for Rare Disease Day 2020 is "Bridging health and social care". The 13th edition of Rare Disease Day will focus on bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day.

For most people living with a rare disease, as well as their family members or carers, the reality of daily life can include any combination of the following: collecting and taking medicines, attending appointments, participating in physical therapy, using specialist equipment and accessing various social and community support services and respite care. Managing these care-related tasks alongside their usual daily activities such as work, school and leisure time can be challenging.

Rare Disease Day 2020 is an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for people living with a rare disease.

Is keratoconus a rare disease?

Keratoconus is found in all parts of the world and in all ethnic groups. The incidence and prevalence rates reported in the medical literature for keratoconus tend to vary widely. One long-term study in the United States indicated a prevalence of 54.5 diagnosed individuals per 100,000 individuals in the general population, or approximately 1 in 2,000 individuals.

According to the National Eye Institute's published data, keratoconus affects about 1 in 2000 people, so it can be considered a rare disease by definition.

However, it seems keratoconus is more common than we think and recent studies suggest the prevalence may be significantly higher than 1:2,000, that being said, Rare Disease Day is for everyone and it is a great opportunity for all of us to spread awareness about orphan diseases and keratoconus.

Change your Facebook profile picture

Change your Facebook profile picture for the Rare Disease Day. changing your profile picture is very easy. we have created Rare Disease Day frames that you can add to your Facebook profile pictures with just one click!

Rare Disease Day is for everyone

Rare Disease Day is for everyone, the general public, rare disease patients, their families, carers, healthcare professionals, researchers, companies and politicians. You do not have to be directly affected by a rare disease, everyone can get involved.

Take part in an interactive face paint social media campaign to raise awareness of rare diseases and show your support for the rare disease community! Post an image or selfie on any social media channel with your face painted and include the #ShowYourRare, #MyRare or #RareDiseaseDay hashtags.

If you would like to post updates on your website and social profiles about the Rare Disease Day, you can find images and other helpful materials on the Rare Disease Day website.

Keratoconus Group supports Rare Disease Day

We proudly support Rare Disease Day and the global effort to raise awareness about rare diseases, the importance of research to develop diagnostics and treatments, and the challenges faced by patients with rare diseases and their families on a daily basis.

Keratoconus Group is an official friend of Rare Disease Day 2020 and we proudly support the Rare Disease Day events by spreading awareness about rare diseases and their impact on patients' lives, and we encourage our community members to talk with their family, friends, and colleagues about rare diseases, and get involved with or host an event for the day.

We would like to thank the European Rare Diseases Organisation (EURORDIS) for this great opportunity. We would also like to thank Reddit Inc. for providing us with free sidebar banners for the r/Keratoconus subreddit to help us spread awareness.

Share to spread awareness!

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