The JMML FoundationApproved 8/14/05

Privacy & ConfidentialityRevised 2/12/06

Privacy & Confidentiality Policy

I. Purpose

The JMML Foundation has created this privacy statement in order to demonstrate its respect for, and firm commitment to protect the privacy of those served by the Foundation and its website.

II. References

  1. The Board Source Privacy Policy:
  2. The Georgia Center for Non-profits Privacy Policy:
  3. The Council on Foundations Privacy Statement:
  4. TrustE Model Privacy Disclosures:
  5. The National Neurofibromatosis Foundation By-laws

III. Definitions

  1. N.A.

IV. Policy

1.The Information We Collect : This notice applies to all information collected or submitted to the JMML Foundation or its website. You may submit personal information to the JMML foundation to join a mailing list, apply for grants, order products, make requests, and register to attend events. When you use the public areas of our Web site, you are doing so anonymously. Following are the types of personal information that may be collected:

a. Name

b. Organization

c. Address

d. E-mail address

e. Phone number

f. Phone/fax numbers

g. Credit/Debit Card Information

2.The Way We Use Information

We do collect aggregate use information, such as the number of hits per page, for internal and use only; we do not provide your personally identifying information to the public.

We use the information you provide about yourself when conducting a transaction to complete that transaction only. We do not share this information with outside parties except to the extent necessary to complete your request.

We use return e-mail addresses to answer the e-mail we receive. Such addresses are not used for any other purpose and are not shared with outside parties.

Finally, we never use or share the personally identifiable information provided to us online in ways unrelated to the ones described above without also providing you an opportunity to opt-out or otherwise prohibit such unrelated uses.

3.User IDs and passwords

Each individual registered to use this site has a unique user ID and password. Users who elect to register on the site will use their e-mail address as their userID and may choose their own passwords.

Passwords are the private property of the registered user. For reasons of security and privacy, we do not give out passwords to anyone. If you forget your password, you can request that your account information be re-sent to the e-mail address you originally provided during registration.

4.Policy Revisions

Due to the changing needs of our constituency and the rapidly evolving technologies on the internet, we may occasionally update this policy. Privacy Policy revisions will be approved by The JMML Foundation Board of Directors and posted on the JMML Foundation website.

V. Personnel Responsibilities

  1. Website Administrator: oversee confidential and proper use of information obtained on the website.
  2. Treasurer: oversee confidential and proper use of information obtained through donations.

VI. Periodic Reviews

  1. Reviewer: Executive Committee
  2. Method: The Website Administrator will report to the Executive Committee as whether the policy is being upheld and inform them of needed revisions due to changes in website security or policy.
  3. Periodicity: Annually or as needed due to changes in administrative procedures or information useage by the website.

VII. Date of Effect: Immediately

Signature of Chair/Acting Chair

1/2