Rare Disease Day

AliEm14

Rare disease day is coming up on February 28!

This day honours those living with all types of rare disease, and is represented by the zebra (it comes from the expression when a doctor sees symptoms to think horses not zebras, or the most common possible complications first, and is a reminder that we 'zebras' exist)

I was transplanted for a rare disease back in 2020 (Glycogen Storage Disease) and since then have met so many rare disease families. We're greatly underrepresented in awareness, and so this day means so much to me personally as a chance to get to share my rare.

If you have a rare disease, we want to hear about it! You can also find out more about rare disease day, and find ways to participate by visiting www.rarediseaseday.org

onlylivingboyinny

I am a proud rare disease patient (Alport syndrome). This rare genetic disorder resulted in my kidney failure and hearing loss. I appreciate you noting this important day of recognition of the 300 million folks worldwide living with a rare disease!

Sdey0522

@AliEm14, thank you for sharing about your #RareDisease and for the reminder about #RareDiseaseDay! 

@onlylivingboyinny, it's truly amazing to me that over 300 million people worldwide live with a rare disease!! Just to put that into perspective, the population of our Nation is about 350 million!! 

The theme for #Rare DiseaseDay2026 is "More Than You Can Imagine”. This global campaign is meant to emphasize the fact that while individual conditions maybe rare, their collective impact is significant, calling for increased equity, community action, and improved healthcare access for those who are living with these rare conditions, and for their loved ones too.  

Globally, the colors of 💗 💙 💚 💜 (pink, blue, green, and purple) are used to illuminate landmarks, homes, and social media, typically on the last day of February at 7 PM local time. Rare diseases don't discriminate, and these vibrant colors represent the diversity of the rare disease community. 

#RRD2026 Is also about celebrating warriors like @AliEm14, @onlylivingboyinny, and so many more!  

As a community we must advocate for our fellow humans who are impacted.  

Please share!

#ShowYourStripes

#RareButStrong

#HopeForRare

#RareDiseaseDay2026

#RareDiseaseCommunity

#RareDiseaseAwareness

#RareButNotAlone

#ShareYourColours

#WorldRareDiseaseDay

#CareAboutRare

#ZebraTales

#LivingRARE

#MoreThan YouCanImagine

#nevergiveup

#advocacymatters

#patientvoices

#raiseawareness

#advocacy

#educate

#support