Linda Thornrose on Creating Connections
Having someone with your new connections with your hand on the pulse of all these areas that connect those of us who suffer from 'orphan' diseases (I, too, have CVID)will benefit all. I have had IVIG...
View ArticleKellie Hanas on Creating Connections
I am so pleased there are advocacy groups trying to educate both patients and their families as well as the general public on these rare diseases. It is extremely frustrating to have people look at me...
View ArticlePamela on Creating Connections
So glad you were able to attend such an educational conferences! It is very important to understand some of these diseases. I am a person who lives with one of thse rare diseases, stiff-persons...
View Articledebbie on Creating Connections
Bravo Abbie, What a great way to kick start your patient advocacy by attending a conferencing and learning how many people and organizations are approaching advocacy and then reaching out to us, the...
View ArticleGail on Creating Connections
Education of those outside our community is the highest priority I see. We are all tied of being told we don't look sick.
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