My sister Anna was born with a very rare genetic disorder called Alagille Syndrome (ALGS). There are only about 8,000 cases of ALGS in the United States and only a couple of hospitals that treat it.
For the past four years, Anna has challenged her friends to perform Rare Acts of Kindness in honor of Rare Disease Day.
I am honored to once again let her take over my blog to spread the word about this event and celebrate rare people everywhere!
Rare Disease Day 2018 is fast approaching!
This year’s theme is “Show your rare. Show you care.” and focuses on recognizing the role patients play in rare disease research.
Medical research became a normal part of my life at a young age, as it does for many with a rare disease. It was a basic concept to me in the beginning…
“If I get an extra stick and give more blood I could help other kids like me.”
“This could show them why people with ALGS have a chronic itch.”
“We’ll see if this drug improves my liver function.”
“There could be a cure.”
Even as a child, I was able to see that research was the only way to try to make the journey easier for future ALGS warriors.
There is more hope for us if there is more research.
But if you know anything about research, you know that it is not a straightforward, easy path.
There is often heartbreak and frustration.
Sometimes it means going through painful tests and procedures only to realize it isn’t beneficial. Sometimes it means experiencing amazing results but once the trial ends that relief is gone.
While we celebrate Rare Disease Day this year, we want to recognize the true bravery of those with rare diseases who have participated in research.
We want to recognize the parents and caretakers who have become well-versed in complex medical and research jargon to decide if a particular study is right for their little warrior.
Help us celebrate the bravery of rare people like me by performing Rare Acts of Kindness in your community on Rare Disease Day.
HOW TO PARTICIPATE:
From February 23 – 28, 2018, perform an act of kindness in your community.
Make sure you snap a photo and share it online with the hashtags #RareActsOfKindness and #ShowYourRare so that we can see how everyone is participating!
To make things even easier, we’ve designed printable cards to share with your #RareActsOfKindness recipients. Click here to print your #RareActsOfKindness cards.
For ideas of ways to celebrate and to connect with other rare people and the folks who love them, make sure you join our facebook event!