Rare Disease Day

Click below to download and share rare disease and Duchenne statistic graphics as you drum up excitement and awareness for Rare Disease Day amongst your family, friends, and colleagues.

Facebook Story – PNG>>

Facebook Post – PNG>>

Sample social media post to pair with a graphic:

I am attending Jett Foundation’s 6th Annual Rare Disease event on February 28th at 1p.m. ET!

This year, Jett Foundation will be recognizing Rare Disease Day with a presentation and panel discussion focused on anxiety and mental health in Duchenne. Moderated by Sean Baumstark and Kyle Bryant, hosts of the popular Two Disabled Dudes podcast series, our panelist will share their experiences managing anxiety and thriving through the challenges it brings while facing a rare disease as an individual, family member, or professional.

Facebook Profile Frame
Change your Facebook profile photo in honor of Rare Disease Day! Use our Canva template to customize the frame with your personal photo.

Canva Template>>

How to use the template:

1. Click the Canva template link. You will need to log in to a Canva account or create a free Canva account.
2. Navigate to “Uploads” in the left-hand toolbar. Click the purple “upload” files button. Upload the photo of your choice!
3. Click and hold the image of your choice in the Image Gallery and drag it over the template, dropping it in the center placeholder circle.
4. Click the “Share” button at the top right-hand corner of the Canva site and click “download.”
5. Head on over to Facebook and change your profile photo to your new Rare Disease Day photo!

Rare Disease Day BINGO

How to play:

• Download the Bingo card to your phone.
• Edit your card on your phone as you complete a task.
• Upload your completed card to your Instagram or Facebook Story and tag us when you’re done!
• The first 5 winners get a Jett swag item!

About Duchenne

Duchenne (pronounced dü-shen) muscular dystrophy (DMD) is the most common fatal pediatric disorder. Duchenne is a progressive neuromuscular disorder that causes a loss of motor, pulmonary, and cardiac function, and ultimately, premature death. Children with Duchenne are born seemingly healthy and decline over time, typically losing their ability to walk around the age of 12 and succumbing to the disease in their early to mid-twenties. Duchenne has no cure.

Rare Disease Fast Facts

• 300 million people worldwide are living with a rare disease.

• Equity for people living with a rare disease is equitable access to diagnosis, treatment, health, social care and opportunity.

• Rare disease currently affect 5% of the worldwide population.

• 72% of rare diseases are genetic whilst others are the result of infections (bacterial or viral), allergies and environmental causes or are rare cancers.

• 70% of genetic rare diseases start in childhood.

Duchenne Fast Facts

• There are approximately 15,000 individuals living with Duchenne in the USA.

• 2,000 individuals and families impacted by Duchenne and other neuromuscular disorders turn to Jett Foundation annually for knowledge, support, and friendship through programs like Camp Promise, Jett Giving Fund, Educational Workshops and Webinars, Family Support Groups, and more.

• 52% of Camp Promise participants are ineligible to join other camp experiences due to age restrictions at other camps.

• Accessible equipment, like accessible vehicles, are often not covered by health insurance, making critical items financially out of reach for many families.

• Duchenne impacts the whole family. Parents, siblings, relatives, and friends often don’t get the support they need to navigate a diagnosis alongside their loved one.

• Duchenne still has no cure. But, there is so much hope. Research and advocacy work have helped increase treatment options and show promising results.

Downloadable Graphics

Facebook Story – PNG >>

Facebook Post – PNG >>

Social Handles 

• Facebook
• Instagram
• Twitter
• LinkedIn

Event Hashtags

• #RareDiseaseDay
• #ThrivingWithDuchenne

Logos

• Red PNG
• Red PNG with Tagline
• Black PNG
• White PNG