A petition “Don’t Stop Research on Rare Diseases!”

Following the concerns raised by the report introducing the Parliamentary discussion on the General Data Protection Regulation, international rare diseases researchers have started a petition “Don’t Stop Research on Rare Diseases!”” to the European Parliament and EU Council. Research on Rare Diseases and the care of patients living with them have specific needs. Due to the rarity of patients and the scarcity of information related to each rare disease, collaboration and maximum use of limited resources available is particularly necessary. Indeed, for most rare diseases no single institution, and in many cases no single country, has a sufficient number of patients to develop a sound knowledge on the disease and its care. Missing the opportunity of exploiting and sharing the small amount of data that are collected, will dramatically delay the improvement of health care of rare diseases patients. The full motivation for the petition and the petition itself can be reached here. Please, support the global rare diseases community and sign the petition.