Meetings
- 10/31/2009
Gainesville, FL 9:00AM ~ 1:00PM
Our Goals:
- Maintain a toll free support line for von Hippel-Lindau disease affected patients.
- Raise level of public awareness of von Hippel-Lindau disease.
- Publish a semi-annual newsletter on current von Hippel-Lindau disease information.
- Provide local and regional meetings to foster education and support connecting von Hippel-Lindau patients, families, and medical professionals.
- Provide a funding program to financially assist at risk individuals with DNA testing for von Hippel-Lindau disease.
- Provide funding for assistance with meals and lodging while undergoing von Hippel-Lindau clinical screening at the National Institutes of Health.
* These programs will be established, as funding becomes available.