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Sandhoff Disease
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0:56
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France 3 Normandie
La petite Emy, 22 mois, est atteinte de la maladie de Sandhoff, une pathologie neurodégénérative rare et incurable. Sa mère se bat pour qu'elle puisse suivre des
France 3 Normandie. . La petite Emy, 22 mois, est atteinte de la maladie de Sandhoff, une pathologie neurodégénérative rare et incurable. Sa mère se bat pour qu'elle puisse suivre des essais cliniques en Angleterre. Elle a lancé un appel aux dons.Toutes les informations ici : https://bit.ly/2ODY12j
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Son fils souffrait de la maladie incurable de Sandhoff. L'espérance de vie des enfants atteints de cette maladie ne dépasse pas l'âge de 4 ans. Gaspard est mort à 3 ans et demi. 👉 http://bit.ly/2JVkk1h | L'Express
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Son fils souffrait de la maladie incurable de Sandhoff. L'espérance de vie des enfants atteints de cette maladie ne dépasse pas l'âge de 4 ans. Gaspard est mort à 3 ans et demi. 👉 http://bit.ly/2JVkk1h | L'Express
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The harsh realities of a rare disease diagnosis can be overwhelming, intimidating, and completely life-shattering. 😔 We never would diminish or dismiss the distinct challenges that come along with rare diseases in our children... But, if you feel like doctors are only seeing your child as their diagnosis not seeing the full potential of the quality of life they are capable of achieving.. then this Experience Miracles Podcast Episode is for you.🎙 Crystal is a rare disease momma ❤️ who shares th
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🤍🦓Rare Disease Day🦓🖤 Our story is a representation of millions! Cayden is 1 out of 300 million affected by a rare disease. It wasn’t until we entered into this community that I first heard of this day. Forever grateful that this life has brought me you🫶🏼 would I take away Sandhoff Disease if I could? Absolutely! Full transparency, pushing for answers, fighting tirelessly for additional testing, and awaiting time-sensitive answers was one of the hardest things I’ve ever gone through. Advoca
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