How to seek help when I'm suffering from a rare genitic disorder

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I'm suffering from a rare genetic disorder called von Hippel-Lindau (VHL)disease.It is characterized by abnormal growth in blood vessels and is said to be a cancer syndrome.While blood vessels grow like trees, in people with VHL little knots of capillaries occur. The VHL gene which normally acts as a tumor suppressor gene is recently been identified to be localized in chromosome 3p 25-26. I have a very rare manifestation of VHL.First it invaded my brain, then after a successful brain surgery it invaded my liver.Now only a liver transplant can save my life.I have about 3 months left during which to gather money for surgery,but since we come from a middle class family, we can't afford the surgery.We approached different NGOs, but most are reluctant to help.The only way I could think was to build a website for help.Though my news have been covered by a leading news channel, and a leading newspaper, few are comming forward to help.Please let me know how else can I approach to unknown people. the website I created is http://caseofrareliverdisease.info/