Purpose/mission of this website
This website was created to offer information about Juvenile Myelomonocytic Leukemia (JMML) to the public, as well as to describe the programs offered by The JMML Foundation in support of JMML research, education to physicians and the public, and charitable programs for families affected by JMML.
The information provided on www.jmmlfoundation.org
is designed to support, not replace, the relationship that exists between a patient/site visitor and his/her physician. The content provided by The JMML Foundation is provided for informational purposes only, in the hope that it will prove helpful to those who choose to take a greater responsibility for their own child's diagnosis and treatment. It is in no way intended to be a substitute for the advice of a qualified professional medical practitioner. The Foundation strongly encourages individuals to consult a physician when unsure of their child's medical condition and advises all users to exercise care when using medical information on the Internet. Though the majority of medical information on this website is written or reviewed by medical practitioners (as stated with each applicable text and further described below), The JMML Foundation cannot guarantee nor take responsibility for the medical accuracy of the documents we publish, nor can it assume any liability for the content of the websites linked to our site.
The intended audience of this website includes the public as a whole, families of children with JMML, and medical practitioners and researchers interested in pursuing a cure for JMML.
Medical Information Authorship
The JMML Foundation website’s medical information content is written by volunteers to the foundation as stated with each applicable text. Specifically:
Privacy and Confidentiality
- JMML Continuing Medical Education (CME) presentations were written and presented by medical practitioners; their qualifications are listed on the JMML CME webpage.
- Information on "About JMML" web pages was reviewed by Dr. Christian Flotho, Division of Pediatric Hematology and Oncology, University of Freiburg, Freiburg, Germany.
- Information on the Frequently Asked Questions (FAQs) page was prepared by Christian Kratz, MD, PhD, a pediatric hematologist-oncologist at NIH.
- JMML annual conference summaries have been published in the JMML Foundation's LifeLine newsletter; the author of these conference summaries is Sandra Thomas, PhD (in microbiology), a medical writer at City of Hope Comprehensive Cancer Center, Duarte, CA (Los Angeles).
- Lay reviews in issues of LifeLine of recently-published scientific articles were written by Todd Harris, PhD (in physics), who is not a medical practitioner but is the parent of a long-term survivor of JMML.
- Expert interviews were conducted with medical practitioners. A brief discussion of each interviewee's qualifications is included in each interview transcript.
- The authorship of other articles in LifeLine is described in each issue of the newsletter. Other website material not specified above or on the individual webpages was written by Fred Dini, President/CEO of The JMML Foundation, who is not a medical practitioner but is the parent of a long-term survivor of JMML.
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 website, you are doing so anonymously. The following are examples of the types of personal information that may be collected:
- E-mail address
- Phone number
- Phone/fax numbers
- 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 user ID 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
Documentation, referencing, and dating of information
The authorship of medical information on this website by medical practitioners is described above and on individual applicable pages of this site. In the future, The JMML Foundation will additionally document sources of medical information on our website pages and newsletter articles from published scientific data where applicable. Pages with medical, legal, and contact information list the date the information that the information was created and last reviewed or modified. We welcome feedback if we have missed any referencing or if readers have questions -- click "Contact Us
Justification of claims
The authorship of medical information on this website is described above and on individual applicable pages of this site. If there are any questions about the benefits or performance of any medical treatment with reference to scientific evidence, identification of any brand names on the site, or information about alternative therapies or products, please contact the Foundation.
To contact us with questions about any content on our website, please click on "Contact Us
" to access an online feedback form.
Disclosure of funding sources
Funding for this website comes entirely from public donations. The JMML Foundation has received funding for its JMML International Symposia and Working Group Meetings from the National Cancer Institute and from the Leukemia Lymphoma Society. Our website administrators are volunteers.
The JMML Foundation does not receive any funding from advertisers on our website. Any future changes to this policy will be posted to our website immediately upon change of the policy.
Some stock photographs included on this site have been provided courtesy of Stock.Xchng (http://www.sxc.hu/
). The clinical trial icon (stethoscope and clipboard) is courtesy of Getideaka at FreeDigitalPhotos.net. Personal photographs have been provided courtesy of our JMML families.
CME = Continuing Medical Education
JMML = Juvenile Myelomonocytic Leukemia
MD = Medical Doctor
NIH - National Institutes of Health
PhD = Doctor of Philosophy
UCSF = University of California, San Francisco
Page created: 24 Aug 2011
Last modified: 20 Jul 2013