Rare Disease Day at SKC

Imagine living with a rare disease – years of uncertainty, restrictions in quality of life, limited treatment options and few fellow sufferers.

You might be asking yourself what exactly defines a rare disease so we would like to answer that question: a rare disease affects fewer than 1 in 2,000 individuals. Currently there are around 6,000 rare diseases identified, where 72% of them are of genetic origin and 70% start in an early age. Given the low prevalence of rare diseases, each of them affects only a handful of patients in different regions of the world. However, there are approximately 300 million patients suffering from rare diseases worldwide.

Given the complexity as well as the scarcity of rare diseases, there is lack of scientific knowledge, delay in diagnosis and absence of valid cure or treatment. Together these factors add up to the heavy burden of rare disease patients and their families. Despite the major scientific advances in the recent decades rare diseases still form a huge health and social burden, forcing health care systems worldwide to rapidly reach their boundaries.

To raise awareness of rare diseases to the public and decision makers and to encourage researchers to address complex rare diseases, the Rare Disease Day was launched by EURORDIS-Rare Diseases Europe and its Council of National Alliances on the 29th of February 2008. It started with an international awareness campaign for rare diseases where events were held in 18 participating countries. Since then, the Rare Disease Day gained huge momentum as thousands of events annually take place in over 100 countries worldwide on the last day of February. The worldwide events include parades, fundraising events, workshops, lectures and dance evenings.

This year, the 13th Rare Disease Day takes place on the 29th of February 2020. The aim of this years' Rare Disease Day is to deliver the messages: "Rare is many worldwide, Rare is strong every day and Rare is proud everywhere!" Besides raising awareness for rare diseases, the Rare Disease Day empowers international collaboration between experts, researchers and clinicians to support delivering novel solutions for the treatment of rare diseases. In addition, the Rare Disease Day aims to empower social inclusion, diagnosis and care for patients suffering from a rare disease.

Here at SKC Consulting, we stand up together for the Rare Disease Day to contribute to the growing momentum of rare disease awareness worldwide. Our vision at SKC is to decrease the heavy burden of patients suffering from a rare disease by supporting the growing orphan drug industry. With our vast expertise we help navigate through the tough regulatory barriers to fulfill a successful market access with a positive benefit assessment and successful price negotiations for direct and reliable novel orphan treatments in Germany.