There are many challenges common to all rare diseases:
1. How to get a correct diagnosis?
2. How to find doctors who understand the condition and can provide therapeutic help.
3. How to manage day to day, making choices and getting medical help to moderate the symptoms and maximize one's quality of life.
The VHL Alliance assembled its first collection of guidelines for patients and their general doctors in 1993, and has been evolving it regularly since then as new information has emerged. This is now one of the best established Handbooks for a rare disease -- now in its 5th edition, and translated into 15 languages.
Joyce and Robin speak with Suzanne Nylander, O.D., editor of the 5th edition, about what's new in the Handbook, how the Handbook helps both patients and doctors, and what they have learned about the power of sharing information -- among patients and among physicians and healthcare systems worldwide.
Hard copies are available for purchase from the Alliance or from Amazon.com. You can download the text for free at http://vhl.org/handbook.
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