Developing new medicines for orphan conditions is indeed a challenge from several perspectives as we have been discussing in the previous articles of this blog. This link will take you to a very recent short article (in English) which gives a historical summary of the orphan drug market and how the pharma industry is moving to this new frontier.
The following articles, while offering more information about the drug development environment, may also give insight in how Advocacy Groups/Foundations/Parents can build up initiatives to make new medicines available:
Beaulieu CL et al. 2012;:39.
Frangioni JV. Nature Biotechnology 2012;30:928–32.
Dolgin E. Nature Medicine 2012;18:335.
All of them are free access.