Direct to consumer treatments and research for rare genetic disorders makes sense if you think about it. Getting funding for diabetes is likely easier and makes more economical sense since the dollars benefit a larger populace.
If you have a rare genetic disorder that might be limited to your family or a few families, you are kinda out of luck.
Your options are
- doing the research yourself
- convince your physician to take it up as a research project
- offer your patient sample for others to research (not the best example but TED Fellow Salvatore Iaconese open sourced his brain cancer for a cure or art)
- well now you can go to raregenomics
Citizen science is the latest trending topic/tag. From ecology projects like http://iseahorse.org/ and http://www.birds.cornell.edu/citsci/ to sequencing projects like uBiome to 'Bioinformatics as a game' like Phylo website it will be interesting to see how this plays out for research and science education as a trend. IMHO, you can only get rare genetics disorder research started as a non-profit now since the cost of sequencing isn't cheap enough yet (see 'A $1000 genome by 2013?' )
'la cura, the cure' http://artisopensource.net/cure/
'Interview with C. Jimmy Lin'