🩺 🦓 On the Confessions of a Rare Mama podcast Jillian Arnold did a great episode talking it through step by step after a diagnosis, how do you find those who can help. Both emotional and financial support are covered as well as connecting to treatment options when there seem to be few or none.
Jump in at the 17 minute mark if you just want the tips
or listen to the whole episode. #NewlyDiagnosed #JustDiagnosed #FAIR #financialsupport #niemannpick
Listen here.​​​​
It's episode 6
How to make connections and utilize all your resources as a rare disease parent
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Daniel DeFabio
Global Genes
Director Community Engagement, Global Genes
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