In addition to difficulties with treatment and expenses, patients with rare diseases in China greatly lack social support. In around 2000, Chinese patients with rare diseases and their families began to organize a series of charitable activities such as medical aid, public education, and policy advocacy. After nearly 20 years, organizations for Chinese patients with rare diseases have progressed. Many problems still remain, including a relatively small number of organizations, a low level of specialization, a lack of stability, limited social influence, and limited access to social resources. In order to spur the development of Chinese rare disease patient organizations, public education needs to be enhanced, policy support is needed, teams need to be created, and communication and cooperation need to be enhanced.
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http://dx.doi.org/10.5582/irdr.2019.01069 | DOI Listing |
J Neurosurg Case Lessons
January 2025
The Trauma and Neuroscience Institutes, St. John's Hospital and Medical Center, Tulsa, Oklahoma.
Background: Direct carotid-cavernous fistulas (CCFs) are relatively rare but dangerous complications of penetrating traumatic brain injury or maxillofacial trauma. A variety of clinical signs have been described, including ophthalmological and neurological ones. In some cases, severely altered cerebral blood flow can present as massive life-threatening bleeding through the nose, subarachnoid hemorrhage, and/or intraparenchymal hemorrhage.
View Article and Find Full Text PDFJ Neurosurg Case Lessons
January 2025
Department of Neurological Surgery, Pauline Braathen Neurological Center, Cleveland Clinic Florida, Weston, Florida.
Background: Radiation-induced sarcoma (RIS) is an exceptionally rare occurrence following radiation therapy, and manifestation usually occurs after a several-year latency period. Herein, the authors report the development of a radiation-induced osteosarcoma of the frontoparietal calvaria following treatment for an oligodendroglioma in an 84-year-old woman.
Observations: The patient had been diagnosed with a grade III anaplastic oligodendroglioma when she was 78 years old.
J Neurosurg Case Lessons
January 2025
Department of Orthopedic Surgery, Iwate Medical University, Shiwa-gun, Iwate Prefecture, Japan.
Background: Septic arthritis of the lumbar facet joint (SALFJ) is a rare condition that can lead to serious complications. The authors present an uncommon case in which SALFJ resulted in bacterial meningitis (BM) with hydrocephalus and pyogenic ventriculitis, causing a disturbance of consciousness. Reports describing perforation of the dura mater by an epidural abscess are rare, and the present case offers valuable insights into the management of complex and severe complications arising from SALFJ.
View Article and Find Full Text PDFJ Neurosurg Case Lessons
January 2025
Department of Neurosurgery, General Hospital Bamberg, Bamberg, Germany.
Background: Optic nerve schwannomas are an extremely rare pathology in neurosurgery. Their origin is rather debatable given the structure of the optic nerve, which does not typically have Schwann cells therein. However, a number of clinical cases of optic nerve tumors classified as schwannomas have been described in the literature.
View Article and Find Full Text PDFBrucellosis, caused by a facultative intracellular gram-negative coccobacillus, is one of the most common zoonotic infections worldwide. Very rarely, brucellosis can cause periprosthetic joint infections (PJI). In this case-based literature review, we summarize the current medical literature regarding Brucella PJI, with the aim to raise awareness among clinicians, particularly in non-endemic areas.
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