A big THANK YOU to you all who have given attention to Bohring-Opitz Syndrome on the international celebrated Rare Disease Day. Thank you for changing your profile picture to spread the word of Bohring-Opitz Syndrome and Rare Diseases, thank you for sharing information about Bohring-Opitz Syndrome like #BOSFACT and BOS infographic to give your family and friends the opportunity to learn more about our rare disease. Also a big shout out to the BOS Foundation who is tirelessly dedicated to children and families with Bohring-Opitz Syndrome. The sum of your individual contribution makes also this year’s Rare Disease Day again a very special day for us, affected by Bohring-Opitz Syndrome. Thank you!
Oh my gosh, you’re soooo sweet but please there’s no need to thank me. I’m only doing what should be expected of any parent, I’m desperate to have my son well. I’m a single mom so things take me a little longer… 🙄 I so badly want to contribute and be more involved with BOS, affiliated organizations, families and children, it’s just taking me a little longer to get settled into our now new norm but I will be very soon. I’m almost there… 🙏🏼 ⭐️💙⭐️
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Thank you. 🙂 Sometimes it’s the little things that matter most. Despite the importance of these big events, it’s the little things, the everyday objects that truly define us. We may share a big event with others, but we don’t all take away the same memories or lessons. So there is no right or wrong way or even a perfect time to be involved. I appreciate your support and your contribution is more than welcome!