Undiagnosed Children’s Awareness Day 2023: The purpose of Undiagnosed Children’s Awareness Day, which is observed annually on the last Friday of April, and on April 28 this year, is to bring attention to undiagnosed inherited diseases that affect children. Approximately 6,000 infants are born each year in the United Kingdom with a syndrome without a name, a genetic disorder so rare that it is often misdiagnosed. The parents of undiagnosed children are concerned that their children will not receive the necessary treatment, as they end up undergoing numerous medical appointments and testing.
HISTORY OF UNDIAGNOSED CHILDREN’S AWARENESS DAY
Many infants today suffer from untreated illnesses. Due to the fact that their symptoms do not readily resemble those of common or previously identified diseases, physicians are limited in their ability to diagnose and treat them. Consequently, up to fifty percent of infants in some clinics go undiagnosed. As the search for the underlying cause continues, many of these families describe their experiences as a “diagnostic odyssey,” travelling from doctor to doctor or hospital to hospital in search of a diagnosis.
Approximately 6,000 infants are born each year in the United Kingdom with an unnamed syndrome. Numerous medical consultations are required for undiagnosed children, and their parents may be concerned that they will not receive the necessary treatment. The undiagnosed children’s awareness day campaign was initiated by SWAN (Syndromes Without a Name), a charitable organisation dedicated to providing a support network for families with undiagnosed children. SWAN is managed by the British nonprofit Genetic Alliance.
Genetic Alliance U.K. originated in 1989 as the Genetic Interest Group, when a group of approximately twelve charities, with the support of the British Clinical Genetics Society, sought an alliance. By 1993, this organisation had become a founding member of the European Alliance of Genetic Support Groups (EAGS). In 2010, the Genetic Interest Group decided to change its name and logo to better reflect its mission. The following year, SWAN U.K. was resurrected as an initiative of Genetic Alliance U.K. to continue assisting families of children with a syndrome without a name, taking over from Liz Swingwood, the grandmother of a child with an undiagnosed inherited illness.
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HOW TO OBSERVE UNDIAGNOSIS OF CHILDREN DAY
Update your profile picture
Use the swan logo as your profile picture across all social media platforms. Encourage others to do the same by sharing them with their friends, family, and colleagues.
Share informative online articles
Participate in SWAN U.K.’s Instagram challenge to draw attention to this serious issue in a more approachable and entertaining manner. To raise awareness, share informative articles and the personal experiences of those affected by this condition and their loved ones.
Donate time to the cause.
Visit the SWAN website to learn how to participate. Through the distribution of pamphlets and registration forms, you can assist families of afflicted children.
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FIVE INTERESTING FACTS ABOUT UNDIAGNOSIS
1 in 20 individuals have a genetic abnormality.
One in twenty infants is born with a genetic abnormality, according to SWAN.
Undiagnosed proportion of children
Sixty percent of infants with genetic disorders will never be diagnosed.
Global developmental delay
Some infants with an unidentified syndrome might be considered to have a global developmental delay.
Probability of epileptic episodes
Children with SWAN may encounter various medical complications, such as epilepsy.
Disability categories of children with
Some children have physical disabilities but no learning impairments, while others have neither physical nor learning impairments.
WHY UNDIAGNOSED CHILDREN’S AWARENESS DAY IS IMPORTANT
It recognises the contributions of affected families
The day provides families with children or young adults with undiagnosed genetic diseases with support. It recognises their efforts and sacrifices and helps them feel as though they are not alone.
It helps physicians comprehend better.
This day provides an opportunity to educate medical professionals on the reasons why certain conditions are difficult to diagnose. In addition, it informs physicians of the effects this syndrome can have on family life.
It promotes global consciousness
This day helps to draw global attention to undiagnosed genetic conditions. It brings together the genomic research community, clinical genetic departments, and the families of individuals with undiagnosed or rare diseases.
UNDIAGNOSED CHILDREN’S AWARENESS DAY DATES
| Year | Date | Day |
|---|---|---|
| 2022 | April 29 | Friday |
| 2023 | April 28 | Friday |
| 2024 | April 26 | Friday |
| 2025 | April 25 | Friday |
| 2026 | April 24 | Friday |
