Press Releases
Medical Miracle – The Result of a Mother’s Love
She had always wanted to be a mother, so it was a dream come true. On the other hand, with all of her health issues how would it ever work.
I Am Rare
…after ten years of “What is going on, and I really am not a whiny woman,” I was diagnosed with Erdheim-Chester Disease.
Fighting the Ultra Rare Erdheim-Chester Disease
Gerry Gallick shares his journey to an ECD diagnosis and how he has coped with the new normal.
Difficult Journeys Lead to Beautiful Destination
I did every test under the sun to find out what it wasn’t. Finally, an answer; Erdheim-Chester Disease (ECD).
Walking With Hope
“I studied everything I could about ECD and thought I had a death sentence coming very soon.” – by Hugh Welborn.
A Spiritual Journey Through ECD
The journey to a diagnosis can be stressful for the entire family. Positive support is critical to a patient’s ...
A Ray of Hope Amid the Sorrow
The diagnosis of a rare disease is punctuated by the gift of life, from an ECD spouse perspective.
Unexpected Hope in Israel
An Erdheim-Chester disease patient tells her hope-filled story for Rare Disease Day 2021.
Climbing for the Cure
Family and friends gather on Father’s Day to reach new heights for research on rare cancer.
Time is of the Essence
Time is of the essence with this disease and it had been destroying my body unknowingly for 14 years. – by Patty Jackson
Noah Finds Courage & Purpose
At the very young age of six years, old Noah began showing signs of illness. After 12 long years of not knowing the cause of these lesions and his pain, the diagnosis of ECD finally came. Despite what Noah was facing, he found a way to help others with a charity that helped others children just like him. Noah also now shares a message to his peers in the fight against ECD, “Don’t give up, keep fighting. The treatments they have now work and will make a difference in your life. Don’t be afraid to ask questions. Stand up for yourself.”
Ben Owens
My family gives me a lot of emotional support with ECD and the accommodations I need. My response to treatment ...
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