Many of us have heard of medical diseases such as diabetes, cardiovascular disease, or COPD. Yet, there are 30 million Americans impacted by rare diseases today.
Out of these 30 million, two-thirds of Americans affected by a rare disease are children, or four children on every full school bus.
This February 28th is Rare Disease Day in the United States, which brings awareness of rare diseases by sharing experiences, such as what it’s like to live with rare diseases, people impacted by them, and how you can help make a difference.
What is a rare disease?
A disease is considered rare if it affects fewer than 200,000. The National Institute of Health (NIH) estimates there are 7,000 rare diseases affecting nearly 30 million Americans, or one in ten, with many of these conditions being severe and some life-threatening.
Unlike many common diseases, such as diabetes, that get are amount of funding, research, and support, rare diseases are often forgotten and often don’t receive the same type of care and treatment provided to more common medical diseases.
Although one in ten Americans are impacted by a rare disease, two-third of these are children. Often times, it can take years for a proper diagnosis of their condition, delaying the need for proper medical care and treatment. This can often times leave parents feeling isolated, as they attempt to discover what ailment their child has.
In an emergency, these rare diseases can be troublesome for many emergency personnel who rarely, if ever encounter a specific rare disease.
MedicAlert Foundation is committed to educating and training our nation’s first responders to look for and read the MedicAlert member's medical ID and react appropriately to the information provided by calling our 24/7 emergency line, and respond by providing the right emergent care and treatment. Therefore, it is critical for children and adults with rare conditions to ensure they have MedicAlert's 24/7 protection and a MedicAlert medical ID.
Help those with rare medical conditions
The National Organization for Rare Diseases is leading the effort to help bring awareness of Rare Disease day on February 28th, which will help bring attention to and support for those with rare medical conditions. This can lead to better research, improved diagnosis, therapies of rare diseases.
Nearly 30 million Americans are counting on the support of others to help address some of these devastating medical problems and symptoms. This year, NORD is celebrating those that have helped make difference in the lives of millions living with rare diseases; from the doctors providing care, parents desperately looking to find the care their child needs, to those advocating for patients with rare diseases.
Here at MedicAlert, we provide medical IDs and 24/7 emergency response support for many of those living with rare diseases. Yet, together on Rare Disease Day, we can all help advance research, policies, and help improve, and save the lives of millions of Americans, because together, we can make a difference.
To learn more about Rare Disease Day, please visit NORD’s website by clicking here.