by Asmaa Javed | Dec 31, 2024 | Old News
The journey to a diagnosis can be stressful for the entire family. Positive support is critical to a patient’s outlook and response to the news. Despite the effects of COVID and the rarity of his newly found disease, William Dean finds his path and fights to stay...
by Asmaa Javed | Dec 31, 2024 | Old News
The diagnosis of a rare disease is punctuated by the gift of life, from an ECD spouse perspective.
by Asmaa Javed | Dec 31, 2024 | Old News
An Erdheim-Chester disease patient tells her hope-filled story for Rare Disease Day 2021.
by Asmaa Javed | Dec 31, 2024 | Old News
Family and friends gather on Father’s Day to reach new heights for research on rare cancer.
by Asmaa Javed | Dec 31, 2024 | Old News
Time is of the essence with this disease and it had been destroying my body unknowingly for 14 years. – by Patty Jackson
by Asmaa Javed | Dec 31, 2024 | Old News
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...
