Arizona Workshop for Families of Children with Genetic Disease: 6/8/2015

April 11, 2015

Located: Westward Look Resort, Tucson Arizona, June 8-11, 2015

The workshop is intended for members of the public with no special previous knowledge of genetics or disease. Simple, interactive classes will explain the structure of DNA, the origin and nature of mutations and how alterations to the sequence of a gene result in genetic disease. In addition, the meeting will include information and discussion of the following topics:

  • basic science research. Why is it so slow and expensive?
  • clinical versus medical science research
  • funding of biomedical research
  • drug discovery and development
  • the special role of pharmaceutical companies
  • the nature of clinical trials
  • inclusion criteria for clinical trials
  • ethical considerations of clinical trials
  • modern diagnostic methods – precision medicine
  • big data methods for analysis of patient populations
  • how to talk with a physician

It is important to understand that the workshop is general and does not relate to any specific disease or medical condition. While every effort will be made to provide useful information, the workshop is unable to offer specific advice or guidance relating to individual cases.

The workshop is free but all participants are asked to stay at the Westward Look Resort location. Excellent room rates are available for workshop participants. Attendance is limited to 25 people. The meeting starts at 9am on Monday April 8th and ends at 1pm on Wednesday April 11th.

“We are focused on parents, or family more generally, of newly diagnosed patients,” says organizer Paul Krieg. ” Though anyone who wishes to learn more about the larger medical research initiative would be welcome to attend.”

The workshop would also benefit patient advocates, as it plans to focus on the general, nonspecific questions of the newly diagnosed.

Interested in attending? Please contact Paul Krieg ([email protected]) for more information.

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