Sarcoidosis: The most common rare disease | 19660
Journal of Genetic Syndromes & Gene Therapy

Journal of Genetic Syndromes & Gene Therapy
Open Access

ISSN: ISSN: 2157-7412

+44 1223 790975

Sarcoidosis: The most common rare disease

5th Annual Congress on Rare Diseases and Orphan Drugs

August 29-30, 2018 | Boston, USA

Mark Landiak

Corporate Dynamics, USA

Scientific Tracks Abstracts: J Genet Syndr Gene Ther

Abstract :

If you are a physician, chances are good that some of your patients have sarcoidosis. Incidences of sarcoidosis seem to be growing worldwide, yet it remains a mysterious and often misunderstood (and misdiagnosed) condition. Sarcoidosis can attack any organ in the body - often with debilitating consequences. Practitioners and Researchers will find the material and resources to be extremely valuable as clues to fighting this and other related illnesses. After a brief overview of what sarcoidosis is and the serious nature of the disease, we will introduce statistics and findings from the Foundation for Sarcoidosis Research (FSR). We will also take a look at some of the difficulties associated with diagnosis and treatment and what is being done in these areas. The demographics of who gets this disease are also telling a story as education and awareness increases and we will provide information on this as well. Every day FSR is working to provide new information and new resources to the medical community to help understand and treat this disease. We will provide a list of resources approved by the Scientific Advisory Board and where you can access them. Treatments to date have been largely trial and error, however, there are some new and existing protocols that seem to be having a positive impact on patient outcomes. We will explore some of these as well along with some of the myths. Not long ago, sarcoidosis was thought to be very rare, but diagnosis is becoming increasingly common and it has become one of the most prevalent of the rare diseases. This session will provide usable resources and information for researchers to use in their studies and for physicians and staff to share with their patients.

Biography :

Mark Landiak is a Patient Advocate with the Foundation for Sarcoidosis Research. In addition, he leads a sarcoidosis support group for patients with various forms of the disease. Up until 2011, Mark was an active sports enthusiast and entrepreneur who had never spent a day in a hospital. That all changed when he was diagnosed with cardiac sarcoidosis. His 28 years as a consultant solving business problems suddenly ended when he could no longer work. He then turned his attention to solving the problems associated with living with a debilitating disease that few people had ever heard of. Mark now shares his personal experience and knowledge of the disease with the medical community and patients. He recently released a book called "Getting Better" which details the strategies he learned to help patients (and families) cope with serious illness and recover to have the best possible quality of life given their circumstances. 100% of the net proceeds of this book go to the Foundation for Sarcoidosis Research for research and patient assistance. After 5 years, several operations and an aggressive treatment plan, he is now back to work on a part-time basis and actively advocates as a speaker and volunteer on behalf of patients suffering from rare disease.