Undiagnosed Children’s Awareness Day 2023: Date, History, Facts about Undiagnosis

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.

The background 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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5 INTERESTING FACTS ABOUT UNDIAGNOSIS

One in twenty infants is born with a genetic abnormality, according to SWAN.

Sixty percent of infants with genetic disorders will never be diagnosed.

Some infants with an unidentified syndrome might be considered to have a global developmental delay.

Children with SWAN may encounter various medical complications, such as epilepsy.

Some children have physical disabilities but no learning impairments, while others have neither physical nor learning impairments.

UNDIAGNOSED CHILDREN’S AWARENESS DAY DATES