A mental Royal Salute to all those mothers and fathers looking after children with rare diseases.
In western countries one has to really battle the system for the expensive medical care that accompanies such diseases. This runs often to a million dollars or more a year. Because there are not too many people to advocate treatment, the governments are under no pressure to allow the costs. Imagine seeing your child waste when there is no adequate funding. This lack of funding also extends to drug research. With the knowledge there will be no profits for treatments that can be found, R&D is at a minimum, restricted to a couple of Universities that are lucky enough to get the huge grant that is required, from a super rich individual or foundation that has been unfortunate enough to have a family member victim of that particular rare disease. https://www.aljazeera.com/features/2021/2/28/you-can-carry-on-or-give-up-families-living-with-rare-diseases Roland. Toronto.
