The TV-program at telebasel last week with focus on “rare diseases” drew the picture of a daily life of people affected by a rare disease and their families and let specialists to have their opinon. It is really positive that this issue has triggered now a great media interest in Switzerland.
Many stories have been forgotten until now, but these people live among us. Their diseases have a name but not a therapy.
Ms. Dr. Prince shows in the TV-program XSUND-TV examples of how they handle their lives and what they do. Orphanbiotec was invited providing solutions to the problems that people affected find in everyday life. We are pleased about it , this displays the visibility and acceptance that we have by now.
We stick to it and we want to encourage pleople –patients and their families- to get engaged with us, either as Friend of foundation, with our Online-Forum or with our patient engagement program „Little Orphan Elf“. Would you like to support our work, please send an email to your friends and colleagues. You can view the program at Tele Basel here (online, 23 min long).
More about our work you can read it in Switzerland and also in Germany. And this is not everything. Have a look regularly on our website.
