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    • #17165

      February 28th has become Rare Diseases Day: now officially recognized for the 12th year in a row as a day to raise awareness and share information about 6000+ rare diseases. It is a movement founded by EURORDIS, whose goal is to give a voice for all of us living with or effected by a number of different rare diseases. This day became known to me a couple of years after my own diagnosis of idiopathic pulmonary fibrosis (IPF); a disease considered “rare”, even though it doesn’t feel that way some days.

      The main site of Rare Disease Day organizers state that one in every 20 people will live with some type of rare disease in their lifetime. If you think of your network of friends, family members and colleagues, it is likely that several people who you love may have a rare disease, if you apply this staggering statistic. This speaks volumes to me about the importance of raising awareness for Rare Diseases, through various events throughout the world and on social media platforms. Will you join me in doing that today?

      I never would have imagined my life would be touched by a rare disease, especially a life-threatening one like IPF. As a young adult I thought I had it all: athletic ability, academic competency, an incredible group of friends and family members, and numerous extra curricular things (ie. volunteering) to keep me busy. This rapidly changed when suddenly I found myself continuously short of breath, and 13 months after that, diagnosed with a life-changing illness that I was told was “rare”. We have almost 1000 members on this site who are effected by IPF, and likely many more who will join us, which makes it hard to understand how this disease is considered rare. However, there are still a striking number of people who don’t know about IPF, and yet, it kills as many Americans each year as breast cancer does. We need to do our part to help raise awareness of IPF, and we can all rally together to do that today on Rare Diseases Day.

      If you’re inclined to share the Rare Disease Day message via social media, please check out this link for downloadable content and images that can easily be shared on various platforms.

      How will you help raise awareness of Rare Diseases Day? 

    • #17179

      OOoopps … I was not aware of this Rare Disease Day … I’M confused right now because I would have like to contribute … I still have to think about why and how to do better next year … I almost want to cry because of this failure :’-(

    • #17186

      Hello my friend,


      @jeanmichelf
      , not a failure at all! You can absolutely still contribute by sharing information about this day on your social media sites, or talking about it to others. Any discussion or awareness raised about rare diseases is important, and never considered a failure – even if it it takes place on another day, the important part is that the information gets out there 🙂 You do lots for our personal rare disease (ie. IPF/PF) community and I am very thankful!

      Cheers to rare….
      Charlene.

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