We are starting the Information hotline for rare diseases - 070030097
The information hotline will provide support to those affected by rare diseases, through general information, answers to social, health and legal questions. Specialists from the Information Center for Rare Diseases and Orphan Drugs will answer medical topics, and the Bulgarian telephone line is part of the network of support lines of the European Organization for Rare Diseases - EURORDIS.
Operators of the Information Hotline are patients and family members of those affected, who have undergone special training with specialists to prepare them for this activity.
"The information telephone line will be maintained by patient assistants who are experienced experts. We wanted to engage people who have come a long way in diagnosing and living with a rare disease in this activity, so that we can provide the most tailored help, needed by people who will look for us," said Natalia Grigorova, head of the initiative and chairman of the Bulgarian Huntington Association.
Partners of the Information Line for Rare Diseases are the Information Center for Rare Diseases and Orphan Drugs, which with a team of over 20 volunteer consultants - leading medical specialists from university clinics in Bulgaria, will respond to various medical cases assigned to the national number for rare diseases. The national number is also part of a network of support information lines coordinated by EURORDIS, the largest organization for rare diseases in Europe.
Families affected by various rare diseases will have the opportunity to benefit from access to a wide range of information, including legal issues affecting their rights as people with disabilities. Calls to 070030097 are charged at the standard price according to the operator used, and all patients will have the opportunity for a free-of-charge option - call back.