🦓🩵💜🩷💚Tomorrow marks Rare Disease Day, a day to come together and amplify our voices in support of those navigating the complexities of rare conditions. As we anticipate this day, I reflect on the memory of my son, Clayton T McCaskill, who, at just one year old, passed away of aggressive pulmonary vein stenosis, which we believe was associated with his extremely rare diagnosis of ATRX-syndrome. His journey serves as a powerful reminder of the importance of advocating for equity in healthcare, social opportunities, and access to therapies for individuals with rare diseases.
Rare Disease Day, established in 2008 and coordinated by EURORDIS and 65+ national alliance partners, is not just a day but a global movement fostering unity across borders. It provides a platform for individuals, healthcare professionals, researchers, policymakers, and the public to share their colors, illuminate buildings, and raise awareness through various means. Tomorrow, let's collectively make a meaningful impact, honoring the memory of those like Clayton and striving to improve the lives of the 300 million people worldwide affected by rare diseases. #NORD
#RareDiseaseDay #ShowYourStripes #CareforRare #RememberingClayton #CHD #PVS #ATRXSyndrome
CEO , CS GLOBAL WELL BEING PROGRAMS
1moHonorable We are working for GLOBAL CHRONIC DISORDERS REVERSAL PROGRAM. It will be our lifetime opportunity to work with you for LIVER DISEASES, PROBLEMS, CIRRHOSIS, CANCER etc DISORDERS. Humble request Under your guidance, banner, support we can make reversal of liver disorders. At present we are working on chronic diseases reversal with an intention DISEASE FREE HEALTHY COUNTRY. In addition to regular medications our natural nutraceuticals could be used. Humble request to organise a zoom meeting . Our scientists could brief the science behind the reversal of liver diseases, problems. 919372050214