Creating Global Communities, page 3

von Hippel-Lindau affects one in 32,000 people

One person in ten is dealing with some rare disease

People with rare diseases struggle

• For acknowledgement
• For correct diagnosis
• For knowledgeable help
• For community

Nine years later, when our son was diagnosed with VHL, I went back to the library and started calling researchers to find out what progress had been made on this rare hereditary cancer syndrome.

There was very little, and it was difficult to find. As I was sitting in the library one day I realized that I was doing what a doctor would have to do – poring through journals and textbooks to glean bits and pieces of information on VHL.

The biggest problems for people with rare disease are: getting a diagnosis, finding helpful information about the condition, and then finding physicians who can provide optimal care.

The other major problem is isolation. In order to protect our confidentiality, the medical community has rules against connecting people with the same condition. In many cases doctors fear that patients will depress each other or alarm each other.

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