Undiagnosed Children’s Awareness Day Date in the current year: April 26, 2024

Thousands of children around the globe live with medical conditions that cause them significant physical, mental, emotional, cognitive, or behavioral challenges but cannot be diagnosed. These conditions are often referred to as “syndromes without a name” (SWAN). SWAN is not a formal diagnosis; it is simply a term that doctors might use when a child has symptoms of a genetic condition, but these symptoms aren’t enough to establish the diagnosis.

Since SWAN essentially is an umbrella term that is used for multiple genetic conditions, symptoms may vary from child to child and range from mild to severe. They include developmental delay, learning difficulties, and physical disabilities.

There are several reasons why children with SWAN can’t or don’t get diagnosed. For example, when a child has an atypical or rare combination of symptoms, it makes it harder to recognize even an easily diagnosed genetic condition. In some conditions, certain symptoms don’t appear until later in life, so they can’t be diagnosed in young children. Sometimes the condition is so rare that most doctors won’t recognize it, and sometimes it hasn’t even been discovered yet. Finally, a lack of access to healthcare services also results in children living without a diagnosis.

Raising a child with an undiagnosed condition can be very hard because it usually involves a lot of medical appointment and tests that can at times seem pointless, frustration with healthcare and education systems, feelings of helplessness and isolation, and a unique set of challenges on top of those that all parents of children affected by various medical conditions have to face. This is why it is so important to raise the profile of SWAN children and bring their families together to show them that they are not alone and help them navigate the complex web of diagnostic testing.

Undiagnosed Children’s Awareness Day is promoted by national SWAN organizations in Australia, the United Kingdom, and the United States. SWAN organizations are non-profits that provide support, information and connections to families of children living with undiagnosed medical conditions, and Undiagnosed Children’s Awareness Day helps them raise awareness of their cause among decision-makers and the general public.

There are many ways to participate in Undiagnosed Children’s Awareness Day. You can learn more about syndromes without a name and share the facts you’ve learned with others to help raise awareness, donate to or volunteer for a SWAN organization, organize a fundraiser or help set up a crowdfunding campaign for an undiagnosed child and their family, and spread the word on social media with the hashtags #UndiagnosedChildrensAwarenessDay, #UndiagnosedChildrensDay and #UCAD.