Month: June 2012

Canary, committed to rare disease patients -the Association of patients of Paroxística nocturnal Hemoglobinuria (PNH) highlights the commitment of the Canary Islands health service patients ultra-rara disease and extreme gravity. -Laureano Tejera, Canarian patient with PNH, enjoy a normal life thanks to the only treatment capable of reducing the risk of thrombosis, main causes of death among those affected by this pathology. Canary Islands, 2012-June day Laureano Tejera began treatment with eculizumab began a new life for him. In 2009, after suffering from thrombosis of the splenic vein and splenic infarction, diagnosed paroxysmal Paroxística Nocturna (PNH), one of the so-called ultra-raras disease characterized by the destruction of red blood cells and which may cause an episode of thrombosis, leading cause of death among these patients. According to the own Laureano, before the treatment, I had fatigue, severe headaches, urinated blood and my health was very weak. Administered me cortisone with the risk for physical impairment in the short term ”. Finally, two years ago, the Canary Islands health service authorized treatment for Laureano with eculizumab, drug approved by the Food and Drug Administration (FDA) and EMA (European Medicines Agency) in 2007, and the only one that has shown to improve the quality of life of PNH patients and reduce the risk of thrombosis, equating to the general population survival ”, stresses Jordi Cruz, President of the Association of patients...

Spanish HIV NGOs denounce in Europe the abandonment of the response to HIV by Government -The Alliance of platforms of HIV, with the support of European NGOs, will send a letter to the Minister of health, requesting to ensure the continuity of the response to HIV in Spain. -The HIV/AIDS Civil Society Forum study measures such as carrying the European Parliament the Government decision Spanish to withdraw the health card to immigrants in an irregular situation. Spain, 2012-June HIV and AIDS in Spain platforms Alliance has presented a report at the European meeting of the HIV/AIDS Civil Society Forum – (Forum HIV / AIDS Civil society) CSF which has denounced the Spanish Government has abandoned the response to HIV and AIDS after the suspension to date of the National Plan on AIDS, doing so jeopardized the progress made during more than three decades by civil organizations working in the prevention and care of HIV / AIDS in our country. The paper cuts in the Spanish budgets for HIV and removal of the right to health for people illegal immigrants ” (Spanish HIV budget cuts & supressions of right to health care of illegal immigrants), which has been tabled during the meeting of the European civil society by the representative of Spain at the Forum and director of the NGO Hispanosida Ferran Pujol, Spanish civil organisations want to denounce in...