#chromosomedisorderawareness

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It's #WorldRareDiseaseDay - celebrate the rarest day of the year accordingly. This special day is in honor and for awareness/support of people affected by rare diseases and disorders. For more info, check out: https://bit.ly/2BqnlBI c/o rarediseaseday.org 🙌 for #1p36DeletionSyndrome (www.1p36dsa.org) and all #chromies that struggle to gain attention or funding. Here's to spreading a bit more awareness. = ) #RareDiseaseDay #WRDD #WorldRareDiseaseMonth https://globalgenes.org/ #GlobalGenesDay #GlobalGenes #RareDisease #WearThatYouCare #WearBecauseYouCare #1p36DSA #1p36BellaBoo #1p36BellaM #chromosomedisorderawareness #Monosomy1p36 #1p36 #1p36Deletion #chromosomedisorder #CareAboutRare #ShowYourRare #WRDD2020 #EagleRare #bourbon #whiskey (at Long Beach, California) https://www.instagram.com/p/B9LYxjVJXg_/?igshid=vgyqm3m7e0qq

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World Rare Disease Month is winding down to #WorldRareDiseaseDay on the last day of Feb - the 29th being the rarest day of the year. It's a celebration of observance, awareness and support of people affected by rare diseases and disorders. For a little more info, check out: https://bit.ly/2BqnlBI from rarediseaseday.org Honoring my daughter who has #1p36DeletionSyndrome (www.1p36dsa.org); her and her #chromies face their own personal challenges, but collectively struggle with gaining attention (raising awareness and helping doctors learn about them) and funding (it's a bit easier to raise funds for something well known). Here's hoping this spreads a bit more awareness. = ) For info on #RareDiseaseDay, #WRDD and #WorldRareDiseaseMonth, visit https://globalgenes.org/ #GlobalGenesDay #GlobalGenes #RareDisease #WearThatYouCare #WearBecauseYouCare #1p36DSA #1p36BellaBoo #1p36BellaM #chromosomedisorderawareness #Monosomy1p36 #1p36 #1p36Deletion #chromosomedisorder #CareAboutRare #ShowYourRare #WRDD2020 (at Long Beach, California) https://www.instagram.com/p/B8-iMbWhKpN/?igshid=1msvj2bvvlz2u

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Open house and donor #fundraiser at @tichenorclinic tonight - surrounded by wonderful, giving people that have come together for a really, really good cause. Truly thankful for many here as they've helped #1p36BellaBoo with #therapy and more. . #childrensclinic #PrincessBella #PrincipessaBella #1p36BellaM #1p36DeletionSyndrome #1p36DSA #Monosomy1p36 #1p36 #raredisease #chromosomedisorderawareness (at Tichenor Clinic for Children) https://www.instagram.com/p/B4llf1WglOU/?igshid=137zcqxz4a8ux

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#FlashbackFriday #dadsofinstagram #raddads #dadlife #daughter #love #QT #smiles #happy #kids #ride #PrincessBella #PrincipessaBella #1p36BellaBoo #1p36BellaM #1p36DeletionSyndrome #1p36DSA www.1p36dsa.org #Monosomy1p36 #1p36 #raredisease #chromosomedisorderawareness (at Knott's Berry Farm) https://www.instagram.com/p/BzjDtBXFt7u/?igshid=1sd3nd6kfrgf5