Monthly Archives: March 2022

Patient Focus Drug Development Meeting

Posted on March 19, 2022 by melelllan

On March 11, the global Rett Community had an extraordinary opportunity- to educate the FDA about the severe consequences of having a child with Rett syndrome- for the child, the family, the community and society. As we listened to the … Continue reading →

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Rare Disease Day 2022

Posted on March 2, 2022 by melelllan

I missed writing yesterday because it was a rare day, indeed; one in which I actually had some place to go and hang out with my other daughter. Such a day comes along slightly more often than once a year, … Continue reading →

Posted in boys with Rett syndrome, Breathing issues in Rett syndrome, Death in Rett syndrome, Rare disease day, Rett Syndrome | Tagged , , , , , | Leave a comment