News and Treatment Updates

Here's where you'll find a regularly updated, broad range of articles written by the AAMDSIF team, allied health organizations and news organizations. By staying well-informed, patients and families are practicing a form of self-support that will help them be more effective self-advocates when engaging with health care providers.

When Your Child With a Rare Disease Doesn’t Feel Brave

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Have you ever done something that you knew was the right thing to do, but you were scared to do it? Or maybe you did something that looked hard, but you decided to try it. That is courage in action and you probably felt very good about what you did. And you should! Courage shows…

What's the best gift for a cancer patient or caregiver?

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Finding the right gift for your friends and family can be tough. It can be even tougher if they're undergoing cancer treatment or are caring for someone who is. After all, you may be trying to make the holidays extra special for them during a difficult time. So, we asked our some…

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