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Cincinnati Children’s Hospital Medical Center Supports and Celebrates Rare!

February 29 @ 11:00 am - 1:00 pm EST

Cchmc flyer rdd celebration 2024 pdf

Share Your Colors and Show Your Stripes on Rare Disease Day!

A collaborative group of divisions within Cincinnati Children’s is hosting a fun-filled, event to celebrate Rare Disease Day! The goal is to make people with rare diseases feel celebrated, valued, and supported by everyone at CCHMC.

We invite you to help join and promote the celebration. Patients, visitors, employees, and passers-by can enjoy fun activities (listed below). The main event will take place at Main Campus on Thursday, February 29 from 11:00am to 1:00pm in Sabin Auditorium and the pre-function area. The pre-function area will be set up for outpatients, visitors, and employees. Sabin Auditorium will be set up for inpatients and their families only.

Rare Disease Day Activities 2024

Tuesday, 2/27/2024: Pediatric Grand Rounds: Invited Speaker, Donna Martin, MD, PhD, Professor and Chair, Departments of Pediatrics and Human Genetics, The University of Michigan Rare Disease Gene Discovery and Functional Studies in CHARGE Syndrome.

Wednesday, 2/28/2024:

4:30-5:00pm Seacrest Studios Rare Disease Day Trivia CCHMC inpatients and their families will have the opportunity to answer Rare Disease Day trivia questions alongside a few CCHMC physicians and other clinicians. Have some fun and see how the patients’ knowledge compares to some favorite care providers!

Midnight -Midnight: CCHMC Lights Up for Rare Disease Day. In a show of support for our patients, families, and co-workers with rare diseases CCHMC’s outdoor lights will be illuminated with the Rare Disease Day colors of Green, Pink, Blue and Purple.

Thursday, 2/29/2024: RARE DISEASE DAY 2024 CELEBRATION!

Distribution of Rare Disease Day stickers. Everyone can wear a sticker and show support.

Human Genetics Bake Sale 11:00am-1:00pm. Sabin Auditorium Pre-function area. All proceeds support a fund to assist patients in the Rare Disease Program travel to CCHMC for diagnosis, treatment and management of their rare disease.

Rare Disease Day coloring/word search packs with rare disease day colored crayons will be available on in-patient units at CCHMC-Base and CCHMC-Liberty distributed through ChildLife.

CCHMC Supports and Celebrates Rare!

11:00am-1:00pm: In-patients will celebrate in Sabin Auditorium

Out-patients, visitors, and employees will celebrate in the Sabin Pre-Function area

Kiddos (and kids at heart) can:

Make your mark – help create a colorful handprint banner by making your handprint with finger paint. The posters will be displayed around the comment “We are all unique and beautiful, but together we are a masterpiece.”

Have some fun playing the Catapult Game.

Learn about the research process by participating in a fun and interactive game.

Participate in a silent dance party. Listen to your favorite music through headphones while dancing next to someone listening to their favorite music.

Make a friendship bracelet.

Listen to a storyteller read a children’s story about Rare Disease or sit quietly and read a book in the Storytime Nook.

Do a science project and see what DNA looks like.

Browse through educational materials about Rare Disease Day and some rare diseases managed at CCHMC.

Watch a slide show highlighting CCHMC patients and their journeys with rare disease, a message from Gov. DeWine, and a livestream of Rare Disease Day events at the NIH (as available).

Glam it up at a “rare” photo booth.

Reach out to Racheal.Powers@cchmc.org and Lindsey.Aschbacher-Smith@cchmc.org with questions and/or interest to help plan next year’s event.

Collect some fun swag!

Details

Date:
February 29
Time:
11:00 am - 1:00 pm EST
Event Category:
National Organization for Rare Disorders