Legal & Privacy Notices

General Disclaimer

The Aplastic Anemia & MDS International Foundation (AA&MDSIF) created and maintains this Web site as a service to those dealing with aplastic anemia, myelodysplastic syndromes (MDS), and paroxysmal nocturnal hemoglobinuria (PNH). The information on this Web site is for informational purposes only. Some of the information on this site discusses medical issues; however, it is not intended as medical advice and should not be construed as such. Inclusion of information on the AA&MDSIF Web site does not constitute an endorsement or recommendation by the AA&MDSIF of any medical care provider, treatment practice, medication, product, or manufacturer. While the AA&MDSIF strives to keep information at this website current, the AA&MDSIF makes no warranty or guarantee concerning accuracy of the content. The AA&MDSIF encourages patients to seek medical advice from a qualified hematologist and to discuss these materials along with their individual questions and concerns with their doctor.  The above disclaimers are not exhaustive and should be read in conjunction with the specific provisions provided below. 

No Medical Advice

The information presented is not to be considered medical advice and is not intended to take the place of professional medical care.  This Web site does not constitute an attempt to practice medicine.  Use of the Web site does not establish a doctor-patient relationship.  Individuals should consult a qualified health care provider for medical advice and answers to personal health questions.

No Warranties

This Web site is provided on an "as is," "as available" basis without warranties of any kind, express or implied, including, but not limited to, those of TITLE, MERCHANTABILITY, FITNESS FOR A PARTICULAR PURPOSE or NON-INFRINGEMENT or any warranty as to accuracy, timeliness, completeness or arising from a course of dealing, usage or trade practice.  No oral advice or written information provided by the AA&MDSIF or its employees shall create a warranty; nor shall members or visitors to the website rely on any such information or advice.

Disclaimer of Endorsement

Reference to any products, services, and hypertext link to the third parties or other information by trade name, trademark, and supplier or otherwise does not constitute or imply its endorsement, sponsorship or recommendation by the AA&MDSIF or its employees. Such reference is for convenience only.

Disclaimer of Liability

The user assumes all responsibility and risk for the use of this Web site. Under no circumstances shall the AA&MDSIF, its employees, or anyone else involved in creating or maintaining this Web  site be liable for any DIRECT, INDIRECT, INCIDENTAL, SPECIAL or CONSEQUENTIAL DAMAGES, or LOST PROFITS resulting directly or indirectly from the use or inability to use the website and/or any other Web sites which are linked to this Web site – or resulting directly or indirectly from mistakes, omissions, interruptions, deletion of files, viruses, errors, defects, or any failure of performance, communications failure, theft, destruction or unauthorized access. In states not allowing some or all of the above limitations of liability, liability shall be limited to the greatest extent allowed by law.

Links

This Web site contains links to other Web sites. Please be aware the AA&MDSIF is not responsible for the accuracy of information found on other Web sites and makes no representations regarding the content of these links. Links to external Web sites are not intended to imply an endorsement of the content of these sites by the AA&MDSIF. The AA&MDSIF encourages users of its Web site to critically evaluate information found on the Internet and to verify information by using many sources. Please consult your doctor on all major medical and health decisions.

The AA&MDSIF welcomes links to our site. Other organizations and individuals may freely link to the AA&MDSIF Web site, provided that such links are not defamatory or otherwise harmful to the AA&MDSIF. The AA&MDSIF requests that any outside organization or individual providing a link to the AA&MDSIF Web site inform the AA&MDSIF of the link by sending an e-mail to info@aamds.org. Requests for reciprocal links are reviewed on a case-by-case basis. The AA&MDSIF reserves the right to request the removal of a link to the AA&MDSIF Web site, or to take appropriate legal action, in the event that a link is defamatory or otherwise harmful to the AA&MDSIF.

Online Conduct

Visitors agree to use the Web site for lawful purposes and are prohibited from posting on the website any unlawful, harmful, threatening, abusive, harassing, defamatory or obscene material of any kind, including, but not limited to, any material which encourages conduct that would constitute a criminal offense, give rise to civil liability or otherwise violate any applicable local, state, national or international law. This applies to any posting that could be termed as Sexual Harassment and/or Discrimination.

Copyright

All information and pages are Copyright © 2011 Aplastic Anemia & MDS International Foundation, 100 Park Avenue, Suite 108, Rockville, Maryland 20850. All rights reserved. Contact the AA&MDSIF for permission to reprint any portion of this site or materials displayed on this site for purposes other than personal, non-commercial use.

Privacy Policy Statement

The Aplastic Anemia & MDS International Foundation (AA&MDSIF) is dedicated to protecting the privacy of visitors to our Web site. The AA&MDSIF has adopted the following privacy policy governing its Web site.

Although the AA&MDSIF is not governed by the privacy rules implemented under HIPAA, the AA&MDSIF is committed to preserving your personal information in accordance with this policy. The Health Insurance Portability and Accountability Act ("HIPAA") was enacted by Congress in 1996 and provides national standards to protect the privacy of personal health information.  HIPAA applies only to "covered entities" such as health plans, health care clearinghouses and health care providers. 

  • It gives patients more control over their health information.
  • It sets boundaries on the use and release of health records.
  • It establishes appropriate safeguards that health care providers and others must achieve to protect the privacy of health information.
  • It holds violators accountable, with civil and criminal penalties that can be imposed if they violate patients' privacy rights.
  • And it strikes a balance when public responsibility supports disclosure of some forms of data – for example, to protect public health

AA&MDSIF also subscribes to the HONcode principles of the Health On the Net Foundation. Health On the Net Foundation is a non-profit, non-governmental organization promoting and guiding the deployment of useful, reliable online medical & health information, and its appropriate and efficient use. Created in 1995, it is one of most respected not-for-profit portals to medical information on the Internet. The HONcode is an authoritative set of voluntary guidelines designed to raise the quality of web-based medical and health information and today, it is the most widely endorsed set of ethical guidelines for site developers related to health information

Our Web site automatically collects information about the IP address, browser type, domain name, date and time of access and general location (country of access) of all visitors. Personal information is not collected on the AA&MDSIF Web site, except in instances where users voluntarily provide the AA&MDSIF with such information.

You provide the AA&MDSIF with personal information on a voluntary basis when you choose to register with us through the Educational Materials form, subscribe to our e-newsletter, complete a Volunteer Network or Patient Registry form, make a donation, or register for AA&MDSIF conferences. Through these mechanisms, we may collect information such as your credit card number when you make a financial transaction and personal demographics, like your name, address, phone number, email address, etc.

The AA&MDSIF respects the personal privacy of the visitors to our Web site. We believe keeping your information private and secure is very important. The AA&MDSIF undertakes to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.

In general, the AA&MDSIF gathers information about users as a group, such as the pages visited and services used most frequently. This information is anonymous and the AA&MDSIF only uses such data in the aggregate to analyze site traffic for general promotional purposes, and for making decisions about the future strategy and direction of the website. The AA&MDSIF has a variety of reasons to study user demographics, interests and behavior based on the information volunteered, including to better identify information needs of people with bone marrow failure diseases and to improve the services offered by the AA&MDSIF. Users may opt out of any such secondary use of personal information by calling the AA&MDSIF at (800) 747-2820.

The aggregated information may also be shared with third parties to promote AA&MDSIF services and the Web site, or to add to general knowledge concerning the need for bone marrow failure disease education and treatment services.

This Web site uses cookies. When you register with AA&MDSIF online, a cookie (a small text file) is placed on your computer by our system. The data contains a unique identification number assigned by our system that recognizes your computer when you come to our Web site, but does not recognize you as an individual. These cookies remain on your computer and are automatically retrieved when you return to our Web site at a later time. We use cookies to remind us to send you information you have requested and to deliver to you, a more personalized service. Cookies also allows us to automatically log you in to the Educational Materials page of our Web site without requiring you re-enter your user information. You may choose to set the properties of your computer so that you are alerted each time a cookie is being stored or you may choose to prohibit the storage of cookies all together. In addition, you may delete cookies that have already been stored on your computer. If you do prohibit the storage of cookies, you should understand you will need to re-enter your email address and other information each time you access any portion of our Web site which requires identifying information.

The AA&MDSIF uses PGP encryption technology to protect your information and this information is always kept strictly confidential. If you have shared with us your credit card information to make a purchase or a donation, or other personal and/or medical information through the Volunteer Network, Patient Registry or Conference Registration forms, your information is stored on a secure server via SSL and is protected by firewalls. All personal information is stored on a secure server via SSL and is protected by firewalls. Only a limited number of the AA&MDSIF staff has access to secure confidential data.

Users may opt out of any use of personal information by calling the AA&MDSIF at (800) 747-2820.

We hold our employees accountable for our privacy principles and each employee is personally responsible for maintaining customer confidence.

The AA&MDSIF will not share with third parties any personal information without your consent. We do not sell or rent your personal information.

The AA&MDSIF reserves the right to disclose or access account information when it has a good-faith belief that such disclosure is necessary for compliance with any law.

We will not deliver targeted advertisements from others to you. We provide no mechanism for an advertiser to reach you, unless you sign up directly with an advertiser or outside vendor.

The AA&MDSIF sometimes contracts with outside vendors and business partners to fulfill customer services and hosting services for the Web site. When we do, we endeavor to work only with partners who adhere to a compatible privacy policy and/or to enter into confidentiality and non-disclosure agreements with vendors stating they will hold information received through our site confidential and will not sell or share user information to any third party or use the information for their own personal use.

The AA&MDSIF may disclose information to law enforcement and other authorities in the rare case when there is reason to believe that disclosure is necessary to identify, contact or bring legal action against someone who may be causing injury to or interference with (either intentionally or unintentionally) the AA&MDSIF's rights or property, other users or anyone else that could be harmed by such activities.

If you have any additional questions about your privacy on the AA&MDSIF Web site, or if you believe that your privacy may have been violated by the AA&MDSIF, please contact the Board of Directors at board@aamds.org or (800) 747-2820. 

The AA&MDSIF seeks to maintain accurate information regarding users. Although this information is not available online for review, concerned users may contact the AA&MDSIF at info@aamds.org or (800) 747-2820.

Please be aware the AA&MDSIF privacy policy is continuously reviewed. The AA&MDSIF may change this Privacy Policy at any time by posting the change on its Web site, and it is your responsibility to be aware of any changes. Your use of the AA&MDSIF Web site constitutes acceptance of the terms of this Privacy Policy.

We welcome your thoughts, which you may send to webmaster@aamds.org.

Privacy Policy Frequently Asked Questions

What is HIPAA?

The Health Insurance Portability and Accountability Act ("HIPAA") was enacted by Congress in 1996 and provides national standards to protect the privacy of personal health information. HIPAA applies only to "covered entities" such as health plans, health care clearinghouses and health care providers.

  • It gives patients more control over their health information.
  • It sets boundaries on the use and release of health records.
  • It establishes appropriate safeguards that health care providers and others must achieve to protect the privacy of health information.
  • It holds violators accountable, with civil and criminal penalties that can be imposed if they violate patients' privacy rights. 
  • And it strikes a balance when public responsibility supports disclosure of some forms of data – for example, to protect public health

What is the Health On the Net Foundation?

Health On the Net Foundation is a non-profit, non-governmental organization promoting and guiding the deployment of useful, reliable online medical & health information, and its appropriate and efficient use.

Created in 1995, it is one of most respected not-for-profit portals to medical information on the Internet.

What is the HONcode?

The HONcode is an authoritative set of voluntary guidelines designed to raise the quality of Web-based medical and health information.

The HONcode is today the most widely endorsed set of ethical guidelines for site developers related to health information.

What information does the AA&MDSIF collect from me when I visit the Web site?

Our Web site automatically collects information about the IP address, browser type, domain name, date and time of access and general location (country of access) of all visitors. Personal information is not collected on the AA&MDSIF Web site, except in instances where users voluntarily provide the AA&MDSIF with such information.

In general, the AA&MDSIF gathers information about users as a group, such as the pages visited and services used most frequently. This information is anonymous and the AA&MDSIF only uses such data in the aggregate to analyze site traffic and to determine what information is most relevant to users, for general promotional purposes, and for making decisions about the future strategy and direction of the website. The aggregated information may also be shared with third parties to promote AA&MDSIF services and the Web site, or to add to general knowledge concerning the need for bone marrow failure disease education and treatment services.

What information is collected when I register with the AA&MDSIF online?

You provide the AA&MDSIF with personal information on a voluntary basis when you choose to register with us through the Educational Materials form, subscribe to our e-newsletter, complete a Volunteer Network or Patient Registry form, make a donation, or register for AA&MDSIF conferences.

Through these mechanisms, we may collect information such as your credit card number when you make a financial transaction and personal demographics, like your name, address, phone number, email address, etc.

The AA&MDSIF respects the personal privacy of the visitors to our Web site. We believe keeping your information private and secure is very important. The AA&MDSIF undertakes to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the website and mirror sites are located.

Why does the AA&MDSIF collect information when I register with the AA&MDSIF online?

The AA&MDSIF has a variety of reasons to study user demographics, interests and behavior based on the information volunteered, including to better identify information needs of people with bone marrow failure diseases and to improve the services offered by the AA&MDSIF. Users may opt out of any such secondary use of personal information by calling the AA&MDSIF at (800) 747-2820.

Does the AA&MDSIF website use computer cookies?

Yes. When you register with AA&MDSIF online, a cookie (a small text file) is placed on your computer by our system. The data contains a unique identification number assigned by our system that recognizes your computer when you come to our website, but does not recognize you as an individual.

These cookies remain on your computer and are automatically retrieved when you return to our website at a later time. We use cookies to remind us to send you information you have requested and to deliver to you, a more personalized service. Using cookies also allows us to automatically log you in to the Educational Materials page of our website without your having to re-enter your user information.

You may choose to set the properties of your computer so that you are alerted each time a cookie is being stored or you may choose to prohibit the storage of cookies all together. In addition, you may delete cookies that have already been stored on your computer. If you do prohibit the storage of cookies, you should understand you will need to re-enter your email address and other information each time you access any portion of our website which requires identifying information.

How does the AA&MDSIF protect my confidential information?

The AA&MDSIF uses PGP encryption technology to protect your information and this information is always kept strictly confidential. Personal information is stored on a secure server via SSL and is protected by firewalls. Only a limited number of the AA&MDSIF staff has access to secure confidential data.

If you have shared with us your credit card information to make a purchase or a donation, or other personal and/or medical information through the Volunteer Network, Patient Registry or Conference Registration forms, your information is stored on a secure server via SSL and is protected by firewalls.

Users may opt out of any use of personal information by calling the AA&MDSIF at 800.747.2820. We hold our employees accountable for our privacy principles and each employee is personally responsible for maintaining customer confidence.

Does the AA&MDSIF share any of my personal information?

The AA&MDSIF will not share with third parties any personal information without your consent. We do not sell or rent your personal information.

The AA&MDSIF reserves the right to disclose or access account information when it has a good-faith belief that such disclosure is necessary for compliance with any law.

We will not deliver targeted advertisements from others to you. We provide no mechanism for an advertiser to reach you, unless you sign up directly with an advertiser or outside vendor.

The AA&MDSIF sometimes contracts with outside vendors and business partners to fulfill customer services and hosting services for the website. When we do, we endeavor to work only with partners who adhere to a compatible privacy policy and/or to enter into confidentiality and non-disclosure agreements with vendors stating they will hold information received through our site confidential and will not sell or share user information to any third party or use the information for their own personal use.

The AA&MDSIF may disclose information to law enforcement and other authorities in the rare case when there is reason to believe that disclosure is necessary to identify, contact or bring legal action against someone who may be causing injury to or interference with (either intentionally or unintentionally) the AA&MDSIF's rights or property, other users or anyone else that could be harmed by such activities.

Where should I go if I have a question or a complaint about the AA&MDSIF's privacy policy and practices?

If you have any additional questions about your privacy on the AA&MDSIF website, or if you believe that your privacy may have been violated by the AA&MDSIF, please contact the Board of Directors at board@aamds.org or (800) 747-2820.

How do I update or correct information I have provided through the AA&MDSIF Web site?

The AA&MDSIF seeks to maintain accurate information regarding users. Although this information is not available online for review, concerned users may contact the AA&MDSIF at info@aamds.org or 800.747.2820. Changes to this Privacy Policy Please be aware the AA&MDSIF privacy policy is continuously reviewed. The AA&MDSIF may change this Privacy Policy at any time by posting the change on its Web site, and it is your responsibility to be aware of any changes. Your use of the AA&MDSIF Web site constitutes acceptance of the terms of this Privacy Policy. We welcome your thoughts, which you may send to info@aamds.org.