Rare Disease Day 2022

At Rare Mamas, we are fired up for Rare Disease Day 2022! Rare Disease Day represents an opportunity to raise awareness and generate change for the over 300 million people worldwide living with a rare disease, their families, and caregivers.

As a mother of a child with a rare disease, it’s personally important for me to spread rare disease awareness. ⁠My eyes have been opened to the needs of the rare disease community. Sometimes if we want things to change, WE have to be the change. ⁠WE have to ask for it, seek it, push for it, educate about it, and advocate for it. ⁠

At Rare Mamas, we advocate for opportunity, accessibility, and inclusion for people with a rare disease. We stand behind these goals written for Rare Disease Day Advocacy:⁠ “We call for equity for people living with a rare disease. ⁠Equity means social opportunity, equitable access to health and social care, diagnosis, and treatment for people living with a rare disease.⁠”⁠

Rare Mamas stands together with the rare disease community to fight for equity for Rare Disease patients! In honor of Rare Disease Day 2022, check out all of the exciting content to raise awareness for rare diseases and uplift our Rare Mama community!

ON THE BLOG

Read brave stories of rare moms navigating their child’s rare disease diagnosis. These moms share vulnerably and openly about the paths to diagnosis, the obstacles they face daily, their unrelenting advocacy for their children, and the way they’ve found hope and courage despite it all!

https://raremamas.com/category/rare-mamas-rising/

ON THE PODCAST

Listen to the February episode of The Rare Mamas Rising Podcast, highlighting two passionate rare disease advocates. Carri Levy is the creator of the show Behind the Mystery, a recurring segment dedicated to rare and genetic diseases that airs on Lifetime TV as part of the morning show The Balancing Act.⁠ She is also a rare mom to Ilana, an adult advocate for rare diseases. ⁠ Brittany Cocilova is Behind the Mystery’s writer/producer who has had her own personal health struggles. ⁠ These women are trailblazers, and they are on a mission to raise rare awareness. This episode will share their stories and reveal why they decided to dedicate Behind the Mystery’s 2022 Rare Disease Day Special to Rare Moms! ⁠

https://raremamas.com/podcast/

ON TV

Watch the Behind the Mystery 2022 Rare Disease Day special dedicated to moms on Lifetime TV. Yes, this special segment is dedicated to the courageous moms confronting their child’s rare disease diagnosis. You’ll meet three moms who are passionate rare advocates, care providers, emotional supporters and are unyielding in their commitment to providing the best for their children.⁠ You’ll also see an exclusive interview with The National Organization of Rare Diseases (NORD).⁠ ⁠You’ll walk away with a sense of community, and you’ll know you are part of a movement to make change for rare patients! ⁠Check it out on February 28, 2022 at 7:30 AM ET/PT on The Lifetime Network.