Privacy Policy | Aplastic Anemia & MDS International Foundation

Privacy Policy

This Privacy Policy describes the information we may collect from you and explains how we use, store and share your personal data and supplements any fair processing notice provided to you.

This website ("the Website") is run by the Aplastic Anemia and MDS International Foundation ("we" and "us").

Please note: this Privacy Policy does not cover links to other websites. We are not responsible for the privacy policies and practices (including use of cookies) of other websites even if you accessed the third party website using links from our Website. We recommend that you check the policy of each website you visit and contact the owner or operator of such website if you have concerns or questions.

Any changes to this Privacy Policy in the future will be posted on this page, and where appropriate, notified to you by email. We will also post a notice on the Website landing page. Please check back frequently to see any updates or changes to this Privacy Policy.







Personal information, including but not limited to your name, postal address, email address, phone number, date of birth and any other information collected on newsletter signup or the registration process for our webinars or conferences through the Website

To send you disease specific and other areas of interest in regards to your disease or research.

No one


As above and through cookies (please see our Cookie Policy)

To personalize and enrich experience gaining knowledge through our website.

No one


Browsing Information about you, including but not limited to your device (mobile, tablet, desktop, including location and your IP address.

Website, including what device you use most; to learn about your preferences and to help us manage your account. All in order so that we can improve our online experience so that you can have the best learning experience.

Please see our cookies policy for further information about what information may be automatically collected when you visit our Website.

Third party agencies (for example Google Adwords) appointed by us that collate and use this data to create a personalized service for you on our behalf and provide us with information about the users/ footfall to our Website

Website, events, third party websites, social media

Personal information, including but not limited to your name, postal address, email address, phone number, date of birth and any other information collected on registration. Or through the newsletter sign up process on the Website or through other websites hosted by third parties

We partner with other agencies who wish to learn more about you to either create more effective treatments. We will contract with them to create surveys to gather your thoughts and experiences. If we send you a survey it is because:

(1) You agreed to take the survey;

(2) You registered for a run/walk/fundraising event with us;

(3) You have ticked an opt-in box or taken a similar positive action (for example ticking a box on registering an account) to say you want to hear from us.

In the case of (1) and (2) when we collect your details, we will give you the chance to opt-out of future communications, including our newsletters and eblasts.

In each case you will be able to unsubscribe from our communications and we will give you this opportunity every time we send you a communication. For example, if you wish to unsubscribe from our emails you can do so at any time, by clicking “unsubscribe” within our weekly newsletters/ emails

Update your preferences

You can contact us anytime at (800) 747-2820


We also implement safeguards to ensure customers who have opted out of receiving such communications don't receive them*

We will never share your personal information for surveys without your express consent

At events (including, but not limited to patient conferences)

Photographic images and other information (e.g. name, address and date of birth).

To the extent we use images of you (i.e. not within a group) for marketing or educational materials, we will ask you to provide your consent and an image rights clearance, which you can always refuse

Where we take photographs of groups at these events, we are doing so for our legitimate business interest of using the images for marketing and promotional materials to promote our business. It is within your reasonable expectations that in attending a PR event, photographs will be taken and images used in this way*

Publication on the Aplastic Anemia and MDS International Website and social media site, marketing and promotional materials

*Where we rely on "legitimate business interests" as the reason for processing your information, we have to carry out a balancing exercise to make sure your rights as an individual aren't impacted. In some cases, we have set out our balancing test above. Otherwise, as a result of our balancing test, which is detailed below, we have determined, acting reasonably and considering the circumstances, that we are able to process your personal data in accordance with the Data Protection Laws on the basis that we have a legitimate business interest.

We have a legitimate interest in processing your personal data as:

  • We need the information to respond to your enquiries and

  • We need the information to send you information.

We consider that it is reasonable for us to process your personal data for the purposes of our legitimate interests outlined above as (a) we process your personal data only so far as is necessary for such purpose and (b) it can be reasonably expected for us to process your personal data in this way.  In most cases the information is being processed for your benefit as well as ours.


The Aplastic Anemia and MDS International Foundation has put in place various security measures in accordance with up-to-date industry procedures as set out in this Privacy Policy to keep personal data as safe and secure as possible and to protect from unauthorized or unlawful processing and accidental loss, destruction or damage. However the Internet and email are not secure. Your communications may route through a number of countries before being delivered, may be intercepted by third parties and may not always reach the intended recipient – this is the nature of the World Wide Web/Internet. We cannot accept responsibility for any such unauthorized access or loss of personal information that is beyond our control.

We may transfer personal information to countries other than the country in which the data was originally collected in order to provide you with the services you have requested.  These countries may not have the same data protection laws as the country in which you initially provided the information and may not provide the same level of protection

We have in place appropriate policies, rules and technical and organizational measures to protect your personal information from unauthorized or unlawful processing, and against accidental loss, destruction of or damage to personal information.



Your information may, for the purposes set out in this Privacy Policy, be disclosed to the third parties set out in THE INFORMATION WE COLLECT AND HOW WE USE IT above

We will only disclose your information to:

  • business partners, suppliers and sub-contractors for the performance of any contract we enter into with them or you

  • to our professional advisors (including without limitation tax, legal or other corporate advisors who provide professional services to the Aplastic Anemia and MDS International Foundation);

  • to other third party suppliers for business administration or IT purposes

  • analytics or search engines, including Google that enable us to optimize and improve your website experience, as well as selected third parties

  • our regulators, law enforcement or fraud prevention agencies, as well as our legal advisers, courts, the Metropolitan police and any other authorized bodies, for the purposes of investigating any actual or suspected criminal activity or other regulatory or legal matters etc.

We will disclose your personal information to third parties:

  • in order to enforce or apply our Website terms of use

  • to protect the rights, property, or safety of us, our staff, our customers, or others.  This includes exchanging information with other companies and organizations (including without limitation the local police or other local law enforcement agencies) for the purposes of staff and customer safety, crime prevention, fraud protection and credit risk reduction; and

  • if we are under a duty to disclose or share your personal data in order to comply with any legal obligation or regulatory requirements, or otherwise for the prevention or detection of fraud or crime.


We will typically keep your personal data for three (3) years from your last interaction with us in order to enable us to keep you informed of the latest information about research or us.  In some circumstances, some of your data will be deleted in much shorter timescales, such as our cookies are refreshed in accordance with our cookies policy


You have a number of rights under Data Protection Laws in relation to the way we process your personal data.  These are set out below.  You may contact us using the details on our Website (or by contacting or calling us (800) 747-2820 to exercise any of these rights, and we will respond to any request received from you promptly and in compliance with Data Protection Laws.




A right to access personal data held by us about you


A right to require us to rectify any inaccurate personal data held by us about you


A right to require us to erase personal data held by us about you.  This right will only apply where (for example): we no longer need to use the personal data to achieve the purpose we collected it for; or where you withdraw your consent if we are using your personal data based on your consent; or where you object to the way we process your data (in line with Right 6 below). 


In certain circumstances, a right to restrict our processing of personal data held by us about you.  This right will only apply where (for example): you dispute the accuracy of the personal data held by us; or where you would have the right to require us to erase the personal data but would prefer that our processing is restricted instead; or where we no longer need to use the personal data to achieve the purpose we collected it for, but you require the data for the purposes of dealing with legal claims


In certain circumstances, a right to receive personal data, which you have provided to us, in a structured, commonly used and machine readable format. 


A right to object to our processing of personal data held by us about you where the processing of such data is necessary for the purposes of our legitimate interests, unless we are able to demonstrate, on balance, legitimate grounds for continuing to process personal data which override your rights or which are for the establishment, exercise or defense of legal claims


A right for you not to be subject to a decision based solely on an automated process, including profiling, which produces legal effects concerning you or similarly significantly affect you


A right to withdraw your consent, where we are relying on it to use your personal data (for example, to provide you with marketing information about our services or products). 

We encourage you to contact us first if you have any queries, comments or concerns about the way we handle your data.


For further information from us on data protection and privacy or any requests concerning your personal information please email us at