Myrovlytis Trust
The Myrovlytis Trust’s mission is to transform the outlook for rare diseases. We are dedicated to driving research, raising awareness, providing support, and improving outcomes for rare disease patients and their families.
With an initial focus on Birt-Hogg-Dubé Syndrome and osteosarcoma, we want to ensure that these patients gain access to the same state-of-the-art technologies, breakthroughs and therapies as those with more common diseases.
We strongly believe that by forming communities connecting patients, researchers and clinicians we can drive innovations in research and support and empower individuals affected by rare conditions.
We established the BHD Foundation to provide support and resources to inform the BHD community and to raise awareness of the condition among researchers and health practitioners. We passionately believe that no one should be disadvantaged because they have a rare disease.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Patient Worthy Posts on Related Conditions
Man’s Best Friend May Help Find a Cure for Cancer
Dogs truly are man’s best friend. They share our lives with us, but now unfortunately, they also share our cancers. There have been speculations for
Pinky Swear That You’ll Support Kids with Cancer
Residents of Omaha ran together during a 5K and 1K run to raise money for kids with cancer and their families at Lewis and Clark
12-year-old Softballer Battles Osteosarcoma
It all started when 12-year-old Mia Trease started having knee pains during a summer of softball. The phone call with the bad news couldn’t have
Osteosarcoma Research Kicked Off with Grant
Some doctors make it their life’s work to study one disease. Maybe they’ve been affected or know somebody affected by it, making it a personal
Woman Predicted Her Cancerous Future Via Dreams
Abi Galatia suffers from stage three osteosarcoma, a very rare and very deadly form of bone cancer. The weird part is, she dreamed that she
Teen Succumbs to Osteosarcoma, Leaving a Legacy of Loving Life
Sean Dixon had his dreams of becoming a cop come true when the Suffolk County Police Headquarters made him a detective for the day, but