World RARE Disease Day

careaboutrare

Today- the last day of February- is World RARE Disease Day. The definition straight from the Global Genes website describes it as:

World RARE Disease Day is an annual observance held on the last day of February to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare diseases and their families.

Why does World RARE Disease Day matter to me? Because I am the Momma to a baby with a rare disease! I’ve shared our Journey with Craniosynostosis many many times. But, I’ll keep sharing it to bring awareness for it, and other rare conditions just like it.

About 1 in every 2000 babies are born with craniosynostosis. That’s a pretty high percentage- and we had never even heard about it before our diagnosis! It has only really been treated for the last 30 years or so. So, as a Cranio Mommy I always see it as part of my responisibility to shine some light on the diagnosis that rocked our family, so that other families may find comfort in our story.

We’re having our 5th Cranioversary (anniversary of my son’s surgery) this June, and I can’t believe the amazing changes we’ve seen. And the advancements they’ve already made in treating cranio and other cranial related problems. It’s amazing the stories I’ve seen shared and the support systems that have been created to aide parents and family members of those with rare diseases.

If you have a rare condition- shout it out! Today, along with every day, is a great day to be heard! Just by sharing your story you can help someone else going through the exact same thing.

And today you can easily support Global Genes and World Rare Disease Day by wearing Jeans to promote awareness. Change your profile photos to support the #CareAboutRARE movement, and share how important rare disease awareness is to you.

There are rare diseases all around us. Some are hidden, you may not even know who is carrying the burden of a rare disease. But, let’s support all of them. With all of the ugliness in the world, it’s the little things that can really make a difference in peoples’ lives. Go ahead and hug your loved ones with rare diseases today, and show them you support them!

 

Comments

  1. Becky says

    Trisomy 4q26 that is what Kalel has, causes developmental delays, seizures and other things. Gross and fine motor skills effected, about 2 years behind other children. SPeech effected. Doctors said he would be severely mentally challenged but we don’t see that. He is learning and doing very well now. Seizures under control with medications. We take one day at a time.

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