This year, Rare Disease Day is on February 29. To shine a light on rare diseases, MM&M asked the public to submit their best creative work to our initiative #YouAreNotAlone. The entries raised awareness both for rare diseases and the patients affected.
The #YouAreNotAlone initiative received a total of 41 entries. We opened a gallery for the public to vote for the creative they felt was most inspiring and Strategic Frameworks took home the Grand Prize. In addition to the Grand Prize, we also compiled a list of staff picks. Thanks to everyone who participated in this initiative to help raise awareness about rare diseases. Please share this work and continue to spread the word.
Have an idea for other causes we should promote? Let us know. Send an email to [email protected]
Rett Syndrome is a rare and devastating chromosomal abnormality that affects mostly young girls. It robs them of their mobility and independence — and their ability to speak. There is no cure for Rett, nor are there approved treatments. Awareness is needed to ramp up the development and coverage of medical intervention.
The Voices of Rett campaign is designed to motivate caregivers and healthcare providers to participate in an international Burden of Illness (BOI) Survey to catalog the impact of Rett on families, patients, and the community. Because these girls cannot speak for themselves, participants will literally become their voices. Results of the BOI survey will be published to raise awareness, educate decision-makers and influence policy.
Created in close collaboration with the Rett Advocacy community and key opinion leaders, The Voices of Rett campaign is making noise on both local and global levels — on social media, web, print materials, live presentations and video. It is, indeed, time to be heard.
To promote awareness of rare diseases in a way that could not be ignored we featured the faces of 5 people living with rare diseases on the side of Boston’s City Hall Plaza using projection animation. In addition, we featured the patients’ stories on our Rare in Common website to note only spread the word about the rare diseases they live with, but to also shed light on the patients’ lives beyond their diseases and to celebrate their strength. The initiative was supported by social media and public relations efforts, enabling the powerful images and stories to be shared to make an impact near and far.
Isaiah Cardona, Eric Thompson and Claire Bauserman, Intouch Solutions
In the 4.8 years on average it takes a patient to be diagnosed with a rare disease, doctors’ visits and misdiagnoses make patients feel they’re trying to prove Bigfoot exists. The “You’re Not Imagining It” campaign and its hashtag #IBelieve will increase awareness and support. And with our “Rare Sightings” location-based augmented reality app, users can search for mythical creatures to learn more about different rare diseases and how prevalent they really are in the world around us.
JPA Health Communications
Rare Disease. Too Common to Ignore: The series of Instagram stories illustrate that everyone is affected: your classmate or the person sitting next to you at a baseball game is likely to have a rare disease. We need more research, resources and attention to find cures. You are not alone!
Lauren Dooman, MicroMass Communications: Rare is Remarkable
PRI Healthcare Solutions
Were you aRARE? The lack of scientific knowledge and quality information on rare diseases often results in delayed diagnoses. The goal of our campaign is to Reach policy makers, Advocate for change, Rally together, Elevate access to diagnosis, treatment, health and social care for people affected by rare diseases. Rare Disease Day is our opportunity to #raiseaRAREness.
WEGO Health celebrates World Rare Disease Day 2020 this February 29th with their entry into the MM&M #YouAreNotAlone video contest. We’re passing along our note of support, empowerment, inspiration, education, and hope to our community and yours – because #AwarenessTouchesEveryone.
We chose to incorporate rare disease patient leaders from our Patient Leader Network by using their own video recordings and photos to create this #WRDD2020 video. Help us spread awareness by sharing our rare disease leader’s message. No one should ever feel like they’re alone – especially on World Rare Disease Day!
And don’t forget to join the community over on the WEGO Health platform by signing up at https://www.wegohealth.com/.
View the complete gallery of submissions here.