Press Releases
Jeopardy in Tunisia
A rare disease patient shares her fight to find the solution she desperately needed.
By Hiba Tohmé
My name ...
Miracle in the Corn Field
When hope was in short supply, this Erdheim-Chester disease patient found a medical team that went above and ...
Tennessee ECD Patient Trying to Beat Rare Disease
Joe Lofaro raises awareness for Rare Disease Day in his community by sharing his story of battling this rare ...
On Rare Disease Day, Experts Say ‘DON’T GIVE UP’
Rare Disease Day raises awareness of disorders that affect very few of us. An ECD patient in Washington shares ...
Teamwork key to treating patient’s rare blood cancer
Former sports journalist Joe Lofaro has little memory of Oct. 23, 2015, when his son Daniel loaded him into a car ...
Fighting Rare Disease as a Family
What one UK family faced with Erdheim-Chester Disease.
By Chesnee Green
September 13, 2018
Erdheim-Chester ...
Relay for Life in Nashville
Joe along with 50 other friends, family, and community members, all wearing the ECD Awareness team shirts, took the opportunity to raise a great deal of awareness by informing all those curious about ECD.
Football, Family, and Rare Disease
For many, fall time means pumpkin spice and sweaters, for others it’s the pigskin and gridiron: Football!
Rare Disease Baffled Medics
Written by an ECD family with the intention to raise awareness. “Special thanks to Dr. Roei Mazor for his ...
We Watch and Wait – Living with Rare Disease
Erdheim-Chester disease is not the same for all patients. By Tina Koslosky
Rare Disease & Care in Italy – English and Italian Versions
An Erdheim-Chester Disease family reports on the state of healthcare in a large region of Italy. By Mariangela Melino
Hope Past the Loss – English and Italian Versions
Losing her husband to Erdheim-Chester disease does not stop this caregiver from having hope for others still ...
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