Von hippel-lindau syndrome

Organizations

Are there good support groups for von Hippel-Lindau syndrome?

Support groups are organizations that provide support, information, advice, referrals to physicians and medical centers, and up-to-date information on research and treatments. Support groups for VHL syndrome include: the VHL Alliance. There are also groups that provide information and support for specific symptoms associated with VHL syndrome including the Kidney Cancer Association or the Pheo Para Troopers.

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Where do I find other people with von Hippel-Lindau syndrome?

Where do I find other people with von Hippel-Lindau syndrome?

Support groups can put you in contact with other people or families that have von Hippel-Lindau (VHL) syndrome. Support groups include the VHL Alliance. There are groups that can help with specific symptoms of VHL syndrome including the Kidney Cancer Association or the Pheo Para Troopers.

There are also online communities for rare disorders such as Ben's Friends, RareConnect, RareShare, or Inspire, which allow individuals and parents to share experiences and advice about dealing with rare disorders.

References
  • The VHL Alliance website. https://vhl.org/
  • Von Hippel-Lindau Disease. The National Organization for Rare Disorders website. http://rarediseases.org/rare-diseases/von-hippel-lindau-disease/

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