Hemeos was founded in 2015 in Washington, D.C. when Doug, one of our cofounders, learned from his wife that a friend was suffering from aplastic anemia. As a minority, she was unable to find a suitable donor. He learned this tragedy affects thousands of other Americans, and also about the massive gap in available donors for ethnic and racial minorities.
We have the ambitious goal to double the number of available minority donors in the U.S. within five years. We believe something can be done to change this system. Please contact us if you would like to be part of our mission.
General Information Definitions
Aggregate Information: Information that has been combined with that of other users and analyzed or evaluated as a whole, such that no specific individual may be reasonably identified.
Anonymous Information: Information that has been stripped of your Registration Information (e.g., your name and contact information) and other identifying data such that you cannot reasonably be identified as an individual.
Genetic Information: DNA based information that distinguishes you based off your A-T-C-G order within your individual genome. Additionally this includes your human leukocyte antigen (HLA) typing. These are identified using your buccal cheek sample swab.
Health Related Information: Information about your personal health that you report in questionnaires or surveys to Hemeos.
Individualized Information: Information about a single person's genetic or health related information, but which is not necessarily tied to Registration contact Information.
Registration Contact Information: Information that can be used on its own or with other information to identify, contact, or locate a single person, or to identify an individual in context. Common examples as used by Hemeos include your name, email, phone number, address, or any other unique information to identify you when you initially register for Hemeos
Web Based Information: Information about your interactions with the Hemeos website (time on site, mobile vs. desktop, web browser) collected through log files, cookies, and web beacon technology.
Information Collection Process and Type
We will record and store web based information for visitors to our website. This includes, but is not limited to, length of time spent on the Website, date the Website was visited, IP address, type of browser, cookies that brought you to our site along with other similar tracking technologies. We use this information to improve the effectiveness of the Website as a recruitment and marketing tool for HEMEOS.
Upon initial registration into the HEMEOS registry, you will be asked registration contact information including name, mailing address, telephone, email address and self-reported health related information. If selected as a possible match for a patient and you choose to go forward with donation, you will be required to submit further health related information.
Hemeos will send you a buccal cheek swab kit after you complete registration online or provide a swab kit at an in person drive. This sample is sent to our partner lab for HLA and other DNA testing, which are both considered genetic information. This sample is stored in a repository at the lab for further testing, if required. The lab does not have personally identifying information to link your sample to you. Each sample is identified by the lab based off a serial number provided by HEMEOS labeled on your swab kit. By participating, you give Hemeos and its laboratory partners permission to obtain genetic information from your cheek swab sample.
The genetic information will be sent by the lab to Hemeos and stored by Hemeos. Hemeos has instituted physical, electronic, and personnel protocols to ensure your data is protected. However, we do not warrant the security of information provided to Hemeos. Hemeos cannot guarantee information you provide Hemeos will remain free from loss, misuse, or alteration by third parties through unauthorized access.
We will also ask for contact information of one or more of your relatives or close acquaintances. We use this relatives and acquaintance information in order to have further contact information if you are identified as a donor but we cannot reach you through the contact information you provided. We may verify with these relatives or close acquaintances the information you have provided. By providing Hemeos their contact information, you affirm they are aware and willing to participate in this process.
Hemeos will also requests that you refer friends or family members who you think would be interested and qualify to be in the Hemeos registry. When you refer someone, we will ask for their contact information. We will use this information only for contacting that individual to be on the Hemeos registry. By participating in a referral program and sharing contact information, you confirm that individual being referred has given you consent for Hemeos to contact him/her.
Hemeos appreciates that the information you share with us is sensitive. We are committed to be transparent in how we use and share this information, and that you provide your explicit consent for us to utilize this information. We will not share your registration contact information or individualized information without your consent. Exception include if we are legally compelled to provide the information to a third party. Under certain circumstances your information may be subject to disclosure pursuant to judicial or other government subpoenas, warrants, or orders, or in coordination with regulatory authorities. Hemeos will preserve and disclose any and all information to law enforcement agencies or others if required to do so by law or in the good faith belief that such preservation or disclosure is reasonably necessary to: (a) comply with legal or regulatory process (such as a judicial proceeding, court order, or government inquiry) or obligations that Hemeos may owe pursuant to ethical and other professional rules, laws, and regulations; (b) enforce the Hemeos Terms of Service and other policies; (c) respond to claims that any content violates the rights of third-parties; or (d) protect the rights, property, or personal safety of Hemeos, its employees, its users, its clients, and the public.
We will use your information to internally determine if you should be contacted to participate in additional questionnaires or testing. These are optional and you are not obligated to participate. Donor will potentially be incentivized for the questionnaires or testing on a case by case basis.
Hemeos uses your information to facilitate medical services to treat patients requiring a bone marrow or stem cell transplant. We will also use the individualized information you provide with third parties for advancement of medical research only if you sign the Research Consent Release. Even with your agreement, we will not share your registration contact information in conjunction with your health information or genetic information unless we receive additional consent from you via a phone call or email. If you do not agree to the Research Consent Release, you can still be on the registry as a potential blood stem cell or bone marrow donor. However, you will not be eligible to participate in additional questionnaires or medical studies that potentially offer incentives for participation. Additionally, genetic information and health related information may still be used by us and shared with our third-party partners that is compiled as anonymous information or aggregate information so that your identity is protected.
By participating, you also consent to your registration contact information, genetic information, and health information being transferred in the event of an acquisition or merger between Hemeos and another company. An example of this is another registry similar to Hemeos. Your information would be used as described in the acquiring company’s Privacy Statement.
Hemeos will not sell, lease, or rent your individualized information to any third-party without obtaining your consent. Hemeos may share compiled, aggregated, or anonymous data with third-parties; This data does not have your registration contact information so that the data cannot reasonably be identified with you. The pharmaceutical industry, universities, and healthcare organizations conduct many studies to advance medical science. We will not share your registration contact information to these groups without your consent, but will inform you of the opportunity for you to directly participate in these efforts if you are eligible based off the information you have provided.
You may withdraw your consent to participate in Research Consent Release at any time by sending a request to firstname.lastname@example.org. Hemeos will not include your genetic information or health related information within 30 days from the receipt of your request.
Changes to this Privacy Statement
Whenever this Privacy Statement is changed in a material way, a notice will be posted as part of this Privacy Statement. After 30 days the changes will become effective. In addition, all registrants will receive an email with notification of the changes prior to the change becoming effective.
If you have questions about this Privacy Statement, please email Hemeos at email@example.com, or send a letter to: Hemeos, 1133 15th Street NW, Floor 12, Washington, DC 20005.
Bone Marrow / Blood Stem Cell Donor Registration: The Website contains a registration process through which you can register to become a member of the HEMEOS registry as a potential donor. HEMEOS registration requires a user’s names, mailing addresses, telephone number, and email. We will also ask for personal health information to determine if you are a suitable candidate to be a donor. You agree that by registering to be a potential donor, you will provide accurate, up to date information about yourself and will update HEMEOS as your status changes. You agree that if any information you provide is inaccurate, not up to date, or incomplete, HEMEOS may not be able to process your application to our registry.
In addition to your information, HEMEOS will request personal contact information of your friends and family. We will only use this information to contact you in the event that we cannot reach you directly. By giving HEMEOS their information, you are confirming that they are aware and agree with you sharing their information with HEMEOS.
Medical Disclaimer: HEMEOS does not intend to provide medical advice or diagnosis on the Website. Discuss your health concerns with your doctor. In addition to the medical screening for donor workup, bone marrow donation procedures should be discussed and eligibility determined based on advice from your doctor based on your personal medical status.
HEMEOS does not claim or guarantee all information on Website is accurate or up to date. By using the Website or Service, you are accepting full responsibility for the use of the information. HEMEOS is not responsible for any damage or claim associated with the use of information found on the Website.
Termination from Access to Website: HEMEOS provides you temporary access to the Website. The content contained on this Website is owned by HEMEOS and is protected by applicable copyrights, trademarks, service marks, and/or other intellectual property rights. HEMEOS hereby expressly reserves all rights not expressly granted in the Website regarding the use of its content. Any use of the content found on the Website requires the express written permission of HEMEOS, which permission may be granted or withheld in HEMEOS’ sole discretion. Failing to receive the express written permission of HEMEOS may result in termination of access to the Website.
You hereby further agree not to: (1) falsify your identity or position within any organization; (2) engage in any activity related to the Website or Service that is illegal; (3) attempt to gain access to secure portions of the Website; or (4) post or transmit any file or computer code or program (i.e. computer virus) to damage any software or hardware. These actions may result in termination of access to the Website.
Content distribution: Content on this Website is provided for your personal, non-commercial use only and may not be downloaded, copied, reproduced, distributed, transmitted, broadcast, displayed, sold, licensed, or otherwise exploited for any other purposes whatsoever without the prior written consent of HEMEOS. In addition, you may not copy, distribute, modify, post, frame or deep link this Website, including any text, graphics, video, audio, software code, user interface design or logos featured on this Website without the prior written consent of HEMEOS. HEMEOS reserves the right to refuse permission for any reason.
The Website content is designed for users in the United States. Access to the Website or the content on the Website may not be legal by certain persons or in certain countries. If you access the Website from outside the United States, you do so at your own risk and are responsible for compliance with the laws of your jurisdiction.
Disclaimer of Warranties / Limitation of Liability: HEMEOS provides no guarantee of the availability or accuracy of the Website. HEMEOS does not guarantee the Website will be free of viruses or other harmful features, and is not liable for any damage to your computer from using the Website. HEMEOS does not provide any warranties of the Website and its content for any use or purpose. You agree by using the Website that you do so at your own risk. Under no circumstances, including but not limited to negligence, breach of contract, or tort will HEMEOS be liable for any damages that arise out of your use of the Website.
You agree to defend, indemnify and hold harmless HEMEOS, its affiliates, agents, officers, employees, partners and licensors from and against any claim, suit, demand or action, and any and all direct losses suffered or incurred by HEMEOS, including reasonable attorneys' fees, in connection with any claims due to, or arising out of, your use of the Website or Service, including your application to become a potential bone marrow or blood stem cell donor.
1133 15th St. NW
Washington DC 20005
855.943.6704 - firstname.lastname@example.org
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