Explaining progress, central storage and sharing of reliable information, responding to requests from patients and families, calling on associations to give talks, etc.
The members of FHU TRANSLAD joined forces with the rare diseases healthcare network AnDDI-Rares to launch “Professor Folk’s blog - Living with a rare genetic disease”. The storyline is built mainly around rare developmental disorders with or without intellectual disability. . The articles demystify genetics, new research, healthcare techniques, administrative procedures and European networks. The blog makes the day-to-day lives of patients easier by providing them with clear, concise information.
It is organised under 7 headings: “Have a read or have a look”, “Training and Info”, “Tips and Tricks”, “Associations Page”, “Events and Activities”, “Regional Corner” and “Worth knowing”.
If you will recall, Professor Folk is the marvellously zany genetics researcher in the illustrated children's book “Voyage to the centre of the cell” by Lorraine Joly !
See Prof. Folk at : http://blog.maladie-genetique-rare.fr/
