Bella, pictured here with her service dog and loving companion, George, was diagnosed with Morquio A syndrome as a little girl. “I grew up with it, so I don’t know what it’s like to not have it.” Read more about Bella and her journey at https://t.co/RsRcrx6hDu #FacesOfRare
Diane lived through questions and mysterious symptoms for decades and now she has dedicated herself to helping others to avoid the uncertainty she faced for so much of her life. Now diagnosed with familial chylomicronemia syndrome. Learn more at https://t.co/6ISP2zxEUJ #ActionFCS
Christian recognizes the importance of seeing past the label of a rare disease and encourages others to do the same. “Rare diseases shouldn’t really define who people are." Read about Christian’s story with hemophilia A at https://t.co/2nC6JGNNIX #FacesOfRare
Arista shares a lot with her twin sister, Arielle, including a diagnosis of hereditary angioedema (HAE). She remains positive: “I think the best part of the journey is having each other.” Hear more about Arista’s and Arielle’s stories. At https://t.co/wqcSl6Nvun #FacesOfRare
Francesca has overcome a lot in the face of and in spite of a diagnosis of familial partial lipodystrophy (FPLD). Her advice to others in the same shoes? Remember that you are truly unique–1 out of millions!–and that’s special. Read more at https://t.co/6ISP2zxEUJ #FacesOfRare
Did you make it to Boston City Hall Plaza on Rare Disease Day? If you missed it, don’t worry. You can still meet these incredible people who face rare diseases every day. Read their stories on https://t.co/6ISP2zxEUJ. #FacesOfRare
Learn more about our #FacesofRare campaign, including last night’s event at @CityHallBoston and about patient Arista Lee via @BostonGlobe https://t.co/Q3PTRCAxk1
It’s Rare Disease Day! Today we celebrate the brave people who face rare diseases every single day. Visit City Hall Plaza today starting at 6:00 to meet all the #FacesOfRare!
Tomorrow is the big day! Can you tell Francesca has been looking forward to Rare Disease Day? Read her story at https://t.co/6ISP2zxEUJ and come visit us at Boston City Hall Plaza at 6:00 PM tomorrow! #FacesOfRare
Have plans for Thursday (2/28)? You should! Come check out an initiative in honor of Rare Disease Day at Boston City Hall Plaza at 6:00 PM. Want to learn more? Check out our new LIVE site at https://t.co/6ISP2zxEUJ. Link in profile.
#FacesOfRare
Christian poses for the Rare Disease Day photoshoot. Want to learn more about his story? Check it out at https://t.co/PbPkifoZh2 AND come see the big event at Boston City Hall Plaza on Thursday, February 28. The fun starts at 6:00! #FacesOfRare#RDD
Check out Bella and George! We had so much fun capturing their pictures and story. The #FacesOfRare website is launching next week. Get ready to be inspired! And join us at Boston City Hall Plaza at 6:00 on 2/28.
Amazing photoshoot. Amazing day. Here, Diane poses for the camera. Something truly special is coming for #RDD. Will you be joining us and Diane at City Hall Plaza on Thursday, February 28 at 6:00 PM? #FacesOfRare
#TBT to Arista behind the scenes at the shoot. Join us to see what all the fuss is about at Boston City Hall Plaza on Thursday, February 28 at 6:00 PM! #RDD#FacesOfRare
Rare Disease Day is celebrated on the last day of February each year. Why? Because February 29 is RARE! This year it’s being celebrated on February 28 and something big is coming. Come check it out! #FacesOfRare