Support MCOPS12 this Rare Disease Day!

What is Rare Disease Day?

This year, something truly special is happening. Rare Disease Day, a global movement dedicated to shedding light on conditions like #MCOPS12, is just around the corner. Picture this: February 29th, the rarest day of the year, all because of it being a leap year. Since its launch in 2008, Rare Disease Day has become a rallying point for an international community committed to tackling the hurdles faced by individuals living with #rarediseases. But what about MCOPS12? Like many other rare diseases, it often struggles to find its place in the medical spotlight. However, when Rare Disease Day rolls around, the spotlight shines brighter than ever on conditions like MCOPS12. It’s a day when individuals, families, healthcare professionals, and advocates unite to raise awareness, share stories, and push for better resources and support. So, get ready to join forces and make a difference this Rare Disease Day!

Here are 8 Tips on how you can participate in the rarest Rare Disease Day 2024!

1. #ShowYourRare and #ShowYourColours by taking photos wearing the Rare Disease Day colors (blue, pink, purple, or green), Zebra Stripes, and/or a Rare Disease Day Shirt and posting on social media! Tag @CureMCOPS12 and use the hashtags: #rarediseaseday #ShowYourColours #CureMCOPS12 #ACureforSophiaandFriends

2. Prior to Rare Disease Day, Send us quotes, stories, and photos of your family (showing your Rare Disease Day colors) that we can use in our social media posts and awareness campaigns on Rare Disease Day! You can email to: wsadler@rarbmutation.org.

3. Reach out to your local news station, magazine, or newspaper to share your MCOPS12 journey and raise awareness about our cause. This is a prime opportunity for MCOPS12 families to share their stories and be featured in the media. Special interest stories are often well-received by media outlets, and press coverage can significantly increase awareness about MCOPS12 and the challenges faced by those living with this rare condition. So, don’t hesitate to reach out and make your voice heard in the media!

4. Host a fundraiser. It could be super easy!  We’re happy to brainstorm ideas with you. Facebook fundraising is an option and fairly easy. Contact us if this sounds like something you’d like to do.

5. Share Cure MCOPS12, A Cure for Sienna, and A Cure for Sophia and Friends posts on social media and invite friends to like and follow our pages on LinkedIn, FB, X, IG.

6. Craft a compelling blog post or article to share on our website. Consider topics such as your child’s journey to an MCOPS12 diagnosis, insights into what you wish the public understood about MCOPS12, or the unique challenges and experiences of caring for someone with this disease. Ready to share your story? Email us at wsadler@rarbmutation.org to begin!

7. Share your Rare Disease Story with Rare Disease focused organizations such as, NORD, RareDiseaseDay.org, Patient Worthy, and/or Rare Revolution Magazine. For more information about this please contact us.

8. Add Rare Disease Day cover photos and profile pictures to your social media to help us spread awareness about MCOPS12!

As we approach Rare Disease Day, we encourage you to consider how you can contribute to spreading awareness about MCOPS12. Whether it’s sharing your story, reaching out to local media, or organizing an awareness campaign in your community, every effort counts. Let us know your plans so we can support and promote your initiatives. Together, we can make a real difference in raising awareness and advocating for those affected by MCOPS12. Thank you for your commitment and support!