Recognizing Rare Disease Day

Every year on February 28th, individuals and institutions worldwide amplify their efforts to raise awareness for Rare Disease Day. 400 million people worldwide live with a rare disease, and far more are impacted daily by them. By some estimates, rare disease affects 3.5% – 5.9% of the population, and many of those affected are lacking the support that they need.

My late wife Ellen passed away after a rare disease diagnosis in 2010. Since then, I’ve done what I can to invoke sustainable change to better the lives of patients, families, and carers. The Clayco Foundation is committed to supporting meaningful research to find treatments and a cure for Retinal vasculopathy with cerebral leukoencephalopathy (RVCL), a rare genetic disease, year-round.

RVCL is an ultra-rare disease that is characterized by the deterioration of small blood vessels. It causes vascular dementia from a single-gene mutation, which is included among Alzheimer’s disease-related dementias. Since there is no widespread research on this condition and symptoms can vary from patient to patient and resemble other diseases, it is often overlooked and misdiagnosed. The Clayco Foundation is dedicated to providing education and support for patients, researchers, and doctors to help combat and cure this disease and foster healthcare innovation.

Jonathan Miner, MD, Ph.D., leads Penn Medicine’s RVCL Research Center and has done an incredible job of guiding teams to better understand and hopefully eradicate RVCL. The center has made great strides in becoming a national leader in cutting-edge research that aims to develop personalized therapies for patients. So much of the work they do is possible because of the funds generated by generous people and organizations through the events The Clayco Foundation hosts, like Illumination 2022. Our Halloween gala raised a record-breaking amount of $1.1 million to help support the search for a cure for RVCL and help pave the way for cures for all genetic orphan diseases.

The Ellen S. Clark Hope Plaza, designed by the renowned architect and artist Maya Lin, provides a special place of peace and refuge for employees, patients, and other visitors at the Washington University Medical Center. This beautiful plaza is an important reminder of the impact of rare disease research – and, most importantly, the value of hope. The Clayco Foundation provides financial support for innovative RVCL research projects which may further our scientific understanding of the disease and potential treatment options.

The team at Penn Medicine collaborates with patients, physicians, and scientists worldwide to spark transformation for rare disease patients and healthcare providers as fast as possible. It is our goal, today and every day, to band together to better the lives of people across our communities through extensive research, education, and unending support.

While, hopefully, a rare disease has not touched your family, there is still a good chance it will affect someone you know personally. We are all on this planet together and require each others’ care and support to advance our communities and shape a better world.

Learn more about RVCL and subscribe to the newsletter to stay up-to-date on research progress here.

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