World Rare Disease Day: February 28, 2018

 

 

JOIN THE MOVEMENT!                                                                      

World Rare Disease Day is an annual observance held the last day of February to raise awareness about rare disease, and the daily impact living with a rare disease has on patients and families. Observance begins February 1st, and extends throughout the month, during which rare disease advocates worldwide host awareness and fundraising events. Please join patients, advocates, caregivers, researchers, physicians, policy experts, industry experts, and the Global Genes team in raising rare disease awareness. 

Here are the top 3 ways you can get involved:

1. Recognize a RARE Caregiver Hero! Do you know a Rare Caregiver Hero? Is there a hero you know who cares for a rare patient?      

Do you know a rare caregiver – a parent, partner, sister or brother; family member, friend or co-worker; neighbor, nurse, or anyone who cares for a rare patient? Rare caregivers do so very much to support patients who struggle daily with rare disease. Please help us recognize a RARE Caregiver Hero! 

• Film yourself “selfie” style, and answer the prompt: “I recognize ________ as a Rare Caregiver Hero because ______________.” (Length of video: approximately 30 seconds) 

• Upload video here.

• Post video on social media with the hashtags #RareHERO and #GlobalGenes. With your submissions we will create a recognition website page that spotlights our priceless RARE Caregiver Heroes!

2. Create Your Custom World Rare Disease Picture Frame!

• Click here to upload your rare picture into your choice of customized, World Rare Disease Day frame!

• Share your framed picture on social media with the hashtags #WRDD2018 and #GlobalGenes

3. Attend a World Rare Disease Day Event!

Global Genes and Festival of Children Foundation are collaborating to host the inaugural Carousel of Possible Dreams, an awareness and fundraising event, Wednesday, February 28, at the Children’s Creativity Museum’s historic LeRoy King Carousel in San Francisco. Rare Disease representatives in support of more than 30 rare foundations will ride the carousel to complete their individual pledge drives that will fund their “dreams” or needs. 

RARE DISEASE AWARENESS MONTH SPOTLIGHT

World Rare Disease Day is the perfect time to highlight those disease communities whose awareness month is February. Let’s help raise awareness for the diseases spotlighted below:

Marfan Syndrome – For more information, please contact:

The Marfan Foundation:  http://info.marfan.org/social-media-for-marfan-awareness-month

Genetic Aortic Disorders Association (GADA) Canada: http://www.gadacanada.ca/

Turner Syndrome – For more information, please contact:

The Turner Syndrome Society: http://www.turnersyndrome.org/awareness-month

Turner Syndrome Global Alliance: http://tsgalliance.org/

Retinal Eye Disease – For more information, please contact Curing Retinal Blindness Foundation: http://crb1.org/blindness-awareness-month-touching-top-world/

February 1st is also Cerebral Creatine Deficiency Syndrome Awareness Day. For more information, please contact the Association for Creatine Deficiency: https://creatineinfo.org/ 

Wear That You Care - Blue Denim Genes Ribbon™
Our popular campaign encouraging people to wear the Blue Denim Genes Ribbon® and their favorite pair of jeans to promote awareness. 
blue-ribbon-button4
Order your Blue Denim Genes Ribbon® now, here!
plan-share-your-rare-disease-event
Find unique, creative, and fun ideas for World Rare Disease Day events you can host. Already have an event planned? Share it with our community! Check back for more info about events near you!
 

Learn more about events happening for World Rare Disease Day 2018 here!

 

 

Find out where the Global Genes team will travel for World Rare Disease Day 2018 (coming soon)! 

 

 

Join our social media #CareAboutRARE movement by changing your profile picture to share how important rare disease awareness is to you! Click the image above to create your very own profile picture to help you bring awareness to your RARE cause this World Rare Disease Day!

The #CareAboutRARE image generator only works on Desktop/Laptop it will not work on Mobile/Tablet.