Rare connective tissue and musculo-skeletal diseases encompass a huge number of conditions which have a great impact on the health of patients. Diverse hereditary and autoimmune disaeses as systemic sclerosis, mixed connective tissue disease, inflammatory idiopathic myopaties, undifferentiated connective tissue disease and antiphospholipid syndrome are included. Diagnostic delay, especially in case of rare manifestation, is unfortunately a common event for these patients.
The network ERN ReCONNET aimes at improving early diagnostic process, patients management and access to care through virtual discussions by experts belonging to or affiliated to the network. Telemedicine will facilitate the interaction between Centres. The network is also aimed at increasing scientific knowledge and will encourage to create network registries and database to identify new biologic and clinical markers to facilitate the early diagnosis.
Finally, education programs for patients and their parents will be developed and new guidelines will be eleborated or implemented in order to favor the clinical research and therapeutic innovation. In these projects patient associations will be actively involved.
Code ORPHA | Code ERN | Denomination |
---|---|---|
ORPHA:221 | RM0010 | Dermatomyositis |
ORPHA:289390 | Sjögren’s syndrome | |
ORPHA:449400 | RCG160 | IgG4 Related Disease |
ORPHA:536 | ORPHA:536 | Systemic lupus erythematosus |
ORPHA:732 | RM0010 | Polymyositis |
ORPHA:80 | RC0220 | Antiphospholipid syndrome |
ORPHA:809 | RM0030 | Mixed connective tissue disease |
ORPHA:81 | RM0021 | Anti-synthetase syndrome |
ORPHA:90002 | Undifferentiated connective tissue disease | |
ORPHA:90291 | RM0120 | Systemic sclerosis |