As CYC we stand in solidarity with other organizations as we express our heartfelt support to the individuals and families affected by this pandemic. Our thoughts are with the vulnerable society especially children living with rare diseases as the effects of this virus will be more devastating to them than to other children. Thus it is important to take time and reflect on the different challenges that are being faced by children living with rare conditions, as everyone else is taking precautions to avoid contracting Covid-19. Some of these challenges include not being able to access protect gear (hand sanitizers, face masks and gloves), failure to access medical treatment and other healthcare services due to the shutdown, medicine shortages and lastly due to “social distancing” and “self-isolation” that is being recommended by the normal world children living with rare conditions maybe at a disadvantage as some of them may require the assistance of someone for them to perform day to day activities.
It is therefore, important to have protective and safe guarding measures that are tailored made for children living with rare conditions such as availing protective gear to families of children living with rare conditions and enabling that families of children living with rare diseases have access to medical supply and devices without disruptions.
CYC acknowledges the efforts being done by the Government, Civil Societies, Healthcare Professionals and other stakeholders with regards to containing Covid-19.
We continue to encourage everyone to follow the guidelines given by World Health Organization (WHO) and our National authorities as we stand together to prevent the spread of the virus.