- Learn about any and every Rare Disease you can.
- Get the conversation started. Knowledge is power and the more people that talk about Rare diseases, the more awareness is created.
- Create a Graphic or submit a graphic request with the form linked here Contact
- Share the Graphics we create so those around you can learn about the many Rare diseases that exist!
After you have educated yourself and your peers, its time to put it to the test through Advocacy.
To advocate is to show public support for a particular cause. Find or create ways to get the word out and share your knowledge about the cause, disease, or organization you are fighting for.
Tell others what you know and ask them to spread the word.
You can be an advocate of a single rare disease or key issue, multiple... or even ALL of them!
- Find Rare Disease events to attend. Understand their mission and find out how you can spread their mission!
- Start an event:
- Reach out to Rare Disease organizations and propose your event ideas.
- If you would like more help and assistance to start an event, send us your event proposal and we will help you by finding resources
- Reach out to Couch Pennies to find an event sponsor, or send your event proposal and we could possibly sponsor your event!
3. Start a social media campaign! A social media campaign is a series of coordinated activities on social media platforms aimed at attaining a specific goal over a set period of time. It can be limited to a single network, or take place across multiple social media platforms
The Boombox Fitness Studio based in San Francisco, California has competed in the Spartan Race in 2017 and 2018. The Spartan Race is an international event where competitors compete in a series of difficult obstacle courses. Team Boombox competed with a sole purpose to raise monetary funds and awareness for NMOSD/MOG (Neuromyelitis Optica Spectrum Disorder/Myelin Oligodendrocyte Glycoprotein Associated Disease).
The Boombox Studio competed in the San Francisco based obstacle course held at Oracle Park.
The Boombox Studio San Francisco manager Daivya Allmond, organizes this awareness race annually, with the backing of the whole Boombox Family.
The Boombox Studio raised over $1,000.00 that went to our 'Couch Cares for Rare' care package program.
When you have educated and advocated for rare, its time to donate. Donations can come in many forms. Whether it be monetary funds, tangible items or your time!
Check with the organization or cause you are passionate for, and see which form of donation is there priority.
Many organizations like Couch Pennies, accept all three!
Social Media Coordinator, Jessica Drury, raised money for CRPS (complex regional pain syndrome) patients struggling to pay for their care by selling Tee-Shirts.
Jess, herself, has CRPS and loves to find unique ways to raise money and awareness for this painful syndrome.
Read Jess's Story Here: Board Members
The "Couch Queen" tee was created to raise awareness for our women warriors battling rare disease. The funds from this went towards our first of many grants. The winner put it towards items for rare disease patients.
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