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Undiagnosed Children's Awareness Day – April 28, 2023

Undiagnosed Children’s Awareness Day, which is observed every last Friday in April, and April 28 this year, is aimed at raising awareness of undiagnosed genetic diseases present in children. Each year, approximately 6,000 children in the United Kingdom are born with a syndrome without a name, a genetic disorder so uncommon that it is likely to go misdiagnosed. Children who aren’t diagnosed end up having a lot of medical appointments, and tests carried out, leaving their parents concerned that they won’t get the help that they need.

History of Undiagnosed Children's Awareness Day

In this day and age, many children have untreated ailments. Since their symptoms don’t easily resemble those of common or previously identified illnesses, doctors are limited in diagnosing and treating them. As a result, up to half of the children in some clinics go undiagnosed. As the quest for the fundamental cause continues, many of these families characterize their experiences as a “diagnostic odyssey,” going from doctor to doctor or hospital to hospital.

Approximately 6,000 children in the United Kingdom are born each year with an unnamed syndrome. Undiagnosed children have a lot of medical appointments, and their parents may be worried that they won’t get the help they need. SWAN (Syndromes Without a Name), a charitable organization dedicated to providing a support network for families with undiagnosed children, launched the undiagnosed children’s awareness day campaign. The charity Genetic Alliance U.K. manages SWAN.

Genetic Alliance U.K. began in 1989 as the Genetic Interest Group, when a group of about twelve charities sought an alliance with the British Clinical Genetics Society’s support. By 1993, this organization had joined the European Alliance of Genetic Support Groups as a founding member (EAGS). By 2010, the Genetic Interest Group had decided to modify its name and logo to more accurately reflect its mission. SWAN U.K. was revived the next year as an initiative of Genetic Alliance U.K. to continue aiding families of children with a syndrome without a name, taking over from Liz Swingwood, the grandmother of a kid with an unexplained hereditary illness.

Undiagnosed Children's Awareness Day timeline

1989
The Origin of Genetic Alliance U.K.

Genetic Alliance U.K. is founded as the Genetic Interest Group.

1993
A Founding Member of the EAGS

The Genetic Interest Support Group joins the European Alliance of Genetic Support Groups as a founding member (EAGS).

2010
The Rebranding of the Genetic Interest Group

The Genetic Interest Group decides to modify its name and logo to more accurately reflect its mission.

2011
The Revival of SWAN U.K.

SWAN U.K. is revived as an initiative of Genetic Alliance U.K. to continue aiding families of children with a syndrome without a name.

Undiagnosed Children's Awareness Day FAQs

How many rare diseases remain undiagnosed?

Around 7,000 defined rare diseases and several others often remain undiagnosed.

How many people in the U.K. have a rare disease?

An estimated 3.5 million people in the U.K. have a rare disease.

Which organizations can people with an undiagnosed condition in the U.K. seek support from?

People with undiagnosed conditions can seek further information and assistance from several organizations like the British Association for Counselling and Psychotherapy, Rare disease U.K., and The Brain Charity.

How to Observe Undiagnosed Children's Awareness Day

  1. Change your profile photo

    Make the swan logo your profile photo on all of your social media platforms. Share them with your friends, family, and coworkers, and encourage others to do the same.

  2. Share informative posts online

    Participate in SWAN U.K's Instagram challenge to bring attention to this serious topic in a way that is more accessible and fun. Share educational articles and stories of those affected by this condition and their loved ones to spread awareness.

  3. Volunteer for the cause

    Visit the SWAN website to know how you can contribute. By handing out pamphlets and registration forms, you can be of help to families of afflicted children.

5 Interesting Facts About Undiagnosed Illnesses

  1. Genetic abnormality of one in 20

    According to SWAN, one out of every 20 children is born with a genetic abnormality.

  2. Undiagnosed percentage of kids

    60% of children with genetic abnormalities will never be diagnosed.

  3. Global developmental delay

    Some children with an unnamed syndrome may be regarded as having a global developmental delay.

  4. Likelihood of epileptic episodes

    Children with SWAN may experience a variety of medical issues, including epilepsy.

  5. Disability types of kids with SWAN

    Some children are physically disabled but do not have learning impairments, whereas others are physically fine but have learning disabilities.

Why Undiagnosed Children's Awareness Day is Important

  1. It honors the efforts of affected families

    The day offers solidarity to families who have children or young adults with undiagnosed genetic diseases. It acknowledges their efforts and sacrifices and helps in making them feel that they are not alone.

  2. It helps doctors understand better

    This day offers an opportunity to educate healthcare providers about why some conditions are difficult to diagnose. It also informs doctors about the impact this syndrome can have on family life.

  3. It creates global awareness

    This day aids in turning the global spotlight on undiagnosed genetic conditions. It brings together the genomic research community, clinical genetic departments, and families of those with an undiagnosed or rare illness.

Undiagnosed Children's Awareness Day dates

YearDateDay
2022April 29Friday
2023April 28Friday
2024April 26Friday
2025April 25Friday
2026April 24Friday

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