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Making Others Aware of Our Disease
February 29th is officially recognized as Rare Disease Day. This is a day in which all rare diseases, and the people in these communities, are recognized. People do all kinds of awareness and advocacy initiatives for it. The Pulmonary Fibrosis Forum is also pushing this initiative, as are the rest of the BioNews sites. The initiative will last for the rest of the month of February. All of us can always do something to advocate for pulmonary fibrosis. For example: I wear my pf and donate life wristbands all the time. People ask questions and I probably give them too much information but people need to know about our disease.
Charlene and I encourage all of our members to advocate or make others aware of the devastation this disease causes. If you are using instagram or twitter you can use the hashtag #WHATMAKESMERAREPF when posting pictures or statements regarding your disease. This will collectively allow others to see all of those effected by this cruel disease!
- For videos:
Get your selfie cam out and tell us who you are, where you are from, and most importantly what makes YOU are rare. Post on your IG, and tag us in the video! Don’t forget to share it using the hashtag #WHATMAKESMERAREPF⠀
Note: we will be creating a video with all the participants. If you want to be part of this initiative email us your video to [email protected]and be sure to use “What Makes Me Rare PF” in the subject line. - For written submissions:
Written submissions: tell us who you are, where you are from, what your rare disease is, but most importantly why YOU are rare. And, send us a photo of yourself — we’ll be sharing throughout the month of Feb! When you post on your IG, tag us in and don’t forget to share it using the hashtag #WHATMAKESMERAREPF
Email all submissions to [email protected] and be sure to use “What Makes Me Rare PF” in the subject line.
- For videos:
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