Is there a CGD specific charity in German speaking countries?
CGD specific charities only exist in the UK and USA. So I recommend English speaking CGD families not only to join the national parent organisations for primary immunodeficiencies, but also to become members of the CGD RT UK charity. What could CGD RT do to help more people with CGD? You are very good at informing people about their condition and also provide excellent material for patients and clinicians. I believe that the breakthroughs for CGD will come from stirring interest from basic scientists outside of CGD research. You need to bring mixes of people together with different knowledge bases, CGD experts and basic scientists. Remember I talked about meeting Manuel Grez. He is a basic scientist. That was such a fortuitous meeting. My impression is that few scientists see the full potential of clinical applications of their basic concepts or indeed don’t know the fate of rare patients with conditions such as CGD and how their work could help. Make people understand what it is like
