Rare Disease Awareness Day
February 29, 2020 is the designated “Rare Disease Awareness Day” across the world. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare disease.
Why does Dup15q Syndrome fall under the definition of a “disease”? A disease is defined as “a disorder of structure or function in a human that impairs normal functioning, manifested by distinguishing signs and symptoms. That sounds scary, but it just means that people living with Dup15q Syndrome have a condition that “impairs normal functioning.”
Why is Dup15q called a “syndrome”? A syndrome is a term that refers to a disease or a disorder that has more than one identifying feature or symptom
Dup15q Syndrome is characterized by having an extra copy of a portion of chromosome 15 in the 11.2 – 13.1 region in combination with a number of symptoms that may include, hypotonia, epilepsy, cognitive delay, motor delays, autism, similar facial features.
There are several ways you can help raise awareness and support of the Dup15q Alliance in honor of Rare Disease Day.
1. Find a Rare Disease Day Event near you – https://www.rarediseaseday.org/events/world
2. Office/Workplace Dress Down Day Encourage your office or workplace to sponsor a fundraiser, where they make a donation to the Dup15q Alliance in order to have a “jeans” day at work! The suggested donation is $10. Starting your fundraiser is easy and we give you all the tools along the way! We even made a Poster for you!
3. Contact your local newspaper to raise awareness by doing a story on Dup15q Syndrome. Sample letter here.
4. Hold a Compassion Experience Classroom Awareness Day by asking your childs classroom to host a wear your blue and mismatched sock awareness day for Rare Disease Day! Here’s how it works – on Rare Disease Day encourage each student to wear mismatched socks and bring a $1.00 that will support the Dup15q Alliance.
Dup15q Alliance will provide:Compassion Experience
The Compassion Experience was created to develop a sense of understanding and compassion among grade school age peers. Because every child is unique, feel free to customize the experience to better fit your child.
– “Chromosome Kids Like Me” book. A child friendly rhyming story that compares genetic disorders to pairs of socks. It promotes inclusion and acceptance from other children, and explains how children with a genetic condition may need a little extra help to play and get involved.
– Printable Socks for each child to color
– Dup15q Alliance Blue Bracelets/Temporary Tattoo
– A letter you can bring to your childs Teacher asking for the class to participate!
Amazing things Happen video – “Introduction to autism that aims to raise awareness among young non-autistic audiences, to stimulate understanding and acceptance in future generations. It is intended to be viewed, discussed and shared widely by anyone but especially teachers and parents”.
Email Believe@dup15q.org by 2/15/2020, if you wish to participate in the classroom event.
5. Make a donation to support the Dup15q Alliance mission.Donate Today
Checks can be made to Dup15q Alliance and sent to PO Box 1669, Highland Park, IL 60035 with the memo, Blue for Dup15q.