Heather Earley with her precious children

“Hope is an olive leaf—evidence of dry land after a flood… ” ~ Max Lucado

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and the God of all comfort who consoles us in all our affliction , so that we may be able to console those who are in any affliction with which we are ourselves are consoled by God.  ~ 2 Corinthians 1:3-4

When we are faced with a diagnosis of rare disease, the news can be devastating.  We become fearful of the future and how we will manage a world that we have no preconceived understanding or involvement in.  Rare disease is typically a world of the unknown, where many suffer from lack of treatment options, lack of physician knowledge, and limited availability and/or access to information due to the rarity of the disease.  We…

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