The National Organization of Rare Disorders (NORD), a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them, such as the Myocarditis Foundation, has developed a Speakers Bureau Data Base. The Speakers Bureau, is a resource for teachers, college and medical school professors, student groups and community members who are seeking speakers to talk about rare diseases in the classroom or at community events. NORD wants to facilitate opportunities for patients and caregivers to share stories about their journey to diagnosis and search for treatment, especially for students preparing for healthcare careers. NORD hopes that the patient voice will raise awareness of rare diseases and promote earlier diagnosis for patients, many of whom go without accurate diagnosis.
On Monday, November 14, 2016, Christopher Corso (a Myocarditis Foundation Board Member and father of a Myocarditis Survivor), spoke with approximately 70 students at Northeastern University in Boston, Massachusetts about Myocarditis… how it has affected his family as well as what is needed to be done to develop an early diagnostic tool specific for myocarditis, the importance to educate physicians on the need for early correct diagnosis, and about the research that has been done and is ongoing to finding out why some people develop the disease and others do not…why it affects boys more than girls…why it seeks out and affects otherwise healthy athletic children, and why it is the 3rd leading cause of Sudden Death in children and young adults.
Even though Viral Myocarditis and Giant Cell Myocarditis are considered rare diseases (less than 200,000 documented cases a year in the U.S.), there is a belief that many more people are affected, either by a mild case that is not diagnosed or when found on autopsy and was not documented in hospital record numbers.
Raising awareness to the general public of the disease as well as educating the medical community about the presenting symptoms, and developing an early diagnostic tool specific for myocarditis are all key to improved outcomes from the disease.
The Myocarditis Foundation says a big “Thank You” to Christopher Corso for sharing his story and information on this disease to these future medical community students !