The Myrovlytis Trust, a UK Charity focused on promoting research and advancing education for rare diseases, and Patient Worthy are now partners! This organization has focused primarily on Birt-Hogg-Dubé syndrome and osteosarcoma.
This organization was founded back in 2007 with the aim to minimize diagnosis time for rare disease patients, encourage research for rare diseases, and advance treatment options for these patient populations. They believe, “no one should be disadvantaged because they have a rare disease.”
Rare disease patients deserve the same attention from the medical community as patients with common conditions.
Myrovlytis Trust aims to increase awareness, provide support, accelerate research, and ultimately, improve outcomes for rare disease patients and caregivers. Their mission can be broken down into Education & Advocacy and Research.
Education & Advocacy
Patients with a wide array of rare diseases sadly share something in common – a long, anxiety-inducing road to diagnosis. This road is often far too long and comes with more questions than answers. Patients are not only trying to figure out their own rare symptoms, but to find a doctor who understands and answers to their myriad of questions.
They must become their own advocate.
By fostering connections between researchers, doctors, and patients, the Myrovlytis Trust works to minimize this burden, provide support, and promote empowerment.
The Myrolvytis Trust’s full research strategy can be read here. But overall, this organization has one research goal – bring patients, researchers, and clinicians together so that they can collaborate in multi-disciplinary projects which will advance research toward rare diseases.
The BHD Foundation was founded in 2011 as a collaboration between Myrolvytis Trust and the Birt-Hogg-Dubé Family Alliance. This foundation aims to both promote research for this rare condition and disseminate the results from such research to the patient community.
The Myrolvytis Trust hopes to replicate the work they’ve done with the BHD Foundation for osteosarcoma, and then expand to even more rare conditions. By establishing a source which has comprehensive information and regular meetings, the organization hopes to improve outcomes for all rare patients.