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Newsstand

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

Originally Published: 10/24/2019
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 up in many ways all around you. Courage is standing up for a friend, helping someone in need or sticking with something that is hard for you to do. They say that having courage makes you a better person, and courage is one of the most important faculties you can develop.   But what if being brave and courageous was...

Constitutional SAMD9L Mutations Cause Familial Myelodysplastic Syndrome And Transient Monosomy 7

Originally Published: 03/15/2018
Familial myelodysplastic syndromes arise from haploinsufficiency of genes involved in hematopoiesis and are primarily associated with early-onset disease. Here we describe a familial syndrome in seven patients from four unrelated pedigrees presenting with myelodysplastic syndrome and loss of chromosome 7/7q. Their median age at diagnosis was 2.1 years (range, 1–42). All patients presented with thrombocytopenia with or without additional cytopenias and a hypocellular marrow without an increase of blasts. Genomic studies identified constitutional mutations (p.H880Q, p.R986H, p.R986C and p....

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

Originally Published: 12/09/2014
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 of our bloggers -- who are cancer patients, survivors and caregivers themselves -- for their holiday gift recommendations. Here's what they said. (con't)
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