Did you know that NOAH maintains a confidential list of more than 850 members willing to have information about research projects and studies sent to them? Are you on that list?

Encouraging research projects that will improve the understanding, diagnosis and management of albinism has always been part of NOAH's mission. In the fall of 2004, NOAH’s Board of Directors adopted a formal research study policy to facilitate connection between researchers and the albinism community.

Here’s how the process works:

· NOAH accepts requests from researchers and scientists for potential research projects.

· The NOAH Board of Scientific Advisors reviews the requests for the sole purpose of determining whether or not such projects are appropriate.

· If the Board of Scientific Advisors determines that a project is appropriate, then NOAH may send out information relative to the study to those members who have expressed a willingness to receive such information.

· Researchers will not be given mailing lists or personal information about any NOAH members.

Would you like to be included on the list to hear about albinism research?

Agreeing to receive information about research projects is separate from agreeing to participate in any particular study. It’s up to each individual to review the research project information received and decide on their own whether to participate or not.

Add your name to the research list today!

If you are willing to receive information about research projects, email info@albinism.org with the your name, mailing address, and year of birth of each person with albinism in your family, and we’ll add you to the list. If you have any questions about this policy, please contact NOAH at 1-800-473-2310 or info@albinism.org.