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. Rare Disease Day is observed every year on February 28—or 29 in leap years—the rarest day of the year.
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 2024
The theme for Rare Disease Day 2024 is "Bridging health and social care". The 15th 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 2022 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.
Rare Disease Day Frequently Asked Questions
What is a rare disease?
In the United States, a disease is considered rare if it affects fewer than 200,000 Americans. Some countries and the European Union have similar but slightly different definitions.
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.
How many people have rare disease?
According to the National Institutes of Health (NIH), there are approximately 7,000 rare diseases affecting between 25 to 30 million Americans. This equates to 1 in 10 Americans, or one on every elevator and four on every bus.
What are some examples of rare diseases?
Rare diseases are present across the medical spectrum. Some are widely recognized by name, such as cystic fibrosis, while others are less known, such as cat eye syndrome. Most cancers (all but a few types) are rare. There are rare neurological and neuromuscular diseases, metabolic diseases, chromosomal disorders, skin diseases, bone and skeletal disorders, and rare diseases affecting the heart, blood, lungs, kidneys, and other body organs and systems. many rare diseases are named for the physicians who first identified them. A few are named for patients or even the hospitals where they were first identified.
How many rare diseases are there?
There are more than 7,000 rare diseases, according to the National Institutes of Health (NIH).
Who is affected by rare diseases?
Many, but not all, rare diseases are genetic. Some are apparent at birth while others do not appear until much later in life. Approximately two-thirds of Americans with rare diseases are children. We are all connected to someone who has a rare disease. Rare diseases are an important public health concern.
How many rare disease have treatments?
Of the 7,000 known rare diseases, approximately 95 percent have no treatment. Many rare diseases and disorders are not being studies by medical researchers. Often, patients are treated "off-label" (treatments that are not approved by the FDAfor the specific disease), whihc can lead to insurance reimbursement problems.
What are some of the problems people with rare diseases experience?
- Difficulty in obtaining an accurate diagnosis (this can take years, which can be critical for stopping or halting the progression of a disease)
- Limited treatment options
- Little or no research being done on the disease
- Difficulty finding physicians or treatment centers with experience for a particular disease
- Paying for treatments that are generally more expensive than those for common diseases
- Reimbursement issues related to private insurance, Medicare, and Medicaid
- Difficulty accessing medical, social, or financial, services or assistance because those making the decisions are not familiar with the disease
- Feeling of isolation and of having been abandoned or "orphaned" by our health care system
Where can I find out more about rare diseases?
The National Organization for rare Disorders (NORD) offers a database of approximately 1,300 reports on specific rare diseases written in patient -friendly language on its website. The most complete list of rare diseases in the U.S. is on the website of the NIH Genetic and Rare Diseases Information Center (GARD).
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 2023 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.