Updated Rare Disease Day Events
February 28th is Rare Disease Day and as always, we will be hosting, attending, and supporting various events, some of the big ones provided below. These are great learning and networking opportunities. It may even spark a passion in you!
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Poor Long-term Clinical Outcomes and Health-Related Quality of Life in Dermatomyositis and Polymyositis w/ Dr. Rohit Aggarwal
Feb. 28th at 11 AM ET / 10 CT / 9 MT / 8 AM PT on Zoom
Dermatomyositis (DM) and polymyositis (PM) are rare autoimmune inflammatory myopathies characterized by muscle weakness and multiple extra-muscular manifestations that have detrimental impact on patients’ lives. Despite various therapies used in clinical practice, a large proportion of patients do not achieve sustainable remission. There is a need to better understand the clinical and humanistic burden of DM and PM.
This presentation by Dr. Rohit Aggarwal is to review current data on the long-term disease outcomes and the true impact of DM and PM on patient’s health-related quality of life.
This event is sponsored by Kezar Life Sciences.
See full details, including Dr. Aggarwal's bio on the event page.
CLICK HERE TO REGISTER FOR FREE
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VIRTUAL RARE DISEASE WEEK ON CAPITOL HILL
Feb. 22nd - Mar. 3rd
Registration is closed but if you are attending, be a part of the Scavenger Hunt and you can earn a donation in your name to the nonprofit of your choice. We hope that is MSU!
Wondering how to access the scavenger hunt?
In the app/on-screen, click Gamification.
GAMIFICATION - POINTS FOR ADVOCACY: THE RARE DISEASE WEEK SCAVENGER HUNT
During Virtual Rare Disease Week, advocates will be given the opportunity to win a grant for their rare disease organization of choice by participating in events, attending virtual Hill meetings, and taking part in other activities. By participating, you can earn points, and the top 50 point-earners from the week will win a grant ranging from $1,000 to $5,000 each, awarded by the EveryLife Foundation.
Last year our Vice President, Lynn Wilson, won a $1,000 grant, and another advocate member a $2500 grant to MSU!
Remember to stop by our exhibit booth on Feb. 22nd during exhibitor hour!
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SHOW YOUR STRIPES WITH NORD!
Feb. 28th - 1:30 - 2:30pm EST
"A community gathering marking the 12th annual Rare Disease Day! This one hour event will be packed with entertainment from a star-studded guest lineup and offer a place to connect and chat with other rare community members and allies.
NORD will be giving away ten Rare Disease Day swag boxes to help you #ShowYourStripes this Rare Disease Day."
CLICK HERE TO REGISTER FOR FREE
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Rare Disease Day Campaigns
Let's ALL get involved! There are various Rare Disease Day campaigns from various organizations. See opportunities below.
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#RareCaregiverAnd Campaign
Let's create awareness for our MYOSITIS CAREGIVERS!
#RareCaregiverAnd encourages family caregivers to celebrate the identities and passions that enrich your life. Being a family caregiver of a loved one with a rare disease is incredibly important but it isn't the only thing that makes you YOU.
Get your own RareCaregiverAnd photo created by CAN. Start by filling out the form.
Click here to access the form
Learn more about Rare Caregivers |
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#CareAboutRare Campaign
Download and print the Global Genes' Care About Rare sign to show your support for the rare disease community! Fill in your sign, take a picture/selfie with the sign, and post your completed sign on your social media.
When posting, tag @GlobalGenes and use the hashtags #RareDiseaseDay and #CareAboutRARE, for a chance to be highlighted on their social media channels. Also, use hashtag #myositis!
Download the sign here
Learn more about Global Genes & World Rare Disease Day
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If you are impacted by myositis, we have loving, understanding, from the Heart support for you!
Join us on Inspire for 24/7 support and check out our Zoom and Clubhouse support.
See all of our support options
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Learn more about our sponsors
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