Immune Deficiency Foundation ePHR
Terms of Service
Last Updated March 16, 2015
IMMUNE DEFICIENCY FOUNDATION IS PROVIDING THIS ePHR ELECTRONIC PERSONAL HEALTH RECORD SERVICE TO YOU AT NO COST, SUBJECT TO YOUR AGREEMENT TO THE FOLLOWING TERMS OF SERVICE:
1. About these Terms of Service
IMMUNE DEFICIENCY FOUNDATION ("we", "us" "our" or "IDF") is the operator of the www.idfephr.org website (the "Site"), the portal through which you may
establish, access and use your IDF electronic personal health record ("ePHR").
We have designed these Terms of Service ("Terms of Service"), to give you a clear understanding of how you can establish and use your ePHR, what steps we take to protect your privacy, what uses
we may make of information that you maintain on your ePHR and other important terms and conditions, related to your registration, access and use of ePHR.
may be amended from time-to-time.
We are not medical providers; IDF does not provide medical advice, diagnosis or treatment. Should you have any questions about your medical care, you should contact your primary physician,
immunologist or other caregiver(s) responsible for your medical treatment. IDF assumes no liability whatsoever for the content of your ePHR or for your or any third party's use, disclosure or
reliance on information entered into your ePHR. IDF does not guarantee that your ePHR will be available at all times. We offer the Site and all services accessible on or through the Site including
IDF's ePHR without warranties, as stated in Section 9 of these Terms of Service.
2. What IDF Provides
The IDF ePHR provides a secure electronic "place" where you can store your personal health records electronically. The ePHR is your personal health record, and it is your responsibility to
maintain and update your ePHR with medical information that you deem appropriate. IDF assumes no responsibility for updating your information or for the accuracy of the information in your ePHR.
You can access your ePHR at any time to make changes or update your information, subject to these Terms of Service.
IDF may elect to provide health news and information, such as health news articles, webcasts and health journal entries that we deem of possible interest to you ("Content") on the Site. We may
add or remove Content from the Site at any time. While IDF attempts to ensure the accuracy of this Site, we do not guarantee the accuracy or reliability of any of the Content linked, or otherwise
accessible from this Site, nor the quality of any of the information, products, or other materials obtained by you as a result of any Content you access on this Site, or through links on this Site
to third party websites. IDF does not control, nor are we responsible for, the privacy policies or information practices of third parties or their websites.
3. Changes to the Terms of Service
These Terms of Service apply to your relationship with IDF and our partners (as defined herein). We may change these Terms of Service at any time, as we deem appropriate. If we make changes to
these Terms of Service, we will notify you by putting a Notice on the Site that the Terms of Service have been changed. You are responsible for reviewing the Site on a regular basis for Notices
that we have posted. A Notice will be effective when we post it on the Site, or, if earlier, when we provide you with an email Notice. If the changes are not acceptable to you, your sole remedy is
to cancel your ePHR account by emailing notice of cancellation to email@example.com. In such event, you will have the rights specified in Section 11, to receive a copy of the information in your
ePHR account. Your use of the Site, or any service provided by or through the Site (including your ePHR account) after the changes to these Terms of Service take effect constitutes your agreement
to the new Terms of Service. You may have additional consumer rights under your local laws that this Agreement cannot change. As used in these Terms of Service, "our partners" shall refer to third
parties that provide information, products or services accessible on or through the Site.
4. Changes to the Site and the ePHR
We are constantly working to improve how the Site enhances its value to ePHR account holders and visitors and as a result we may add or remove features or Content, or substitute existing
features or Content with others, as we determine appropriate. You agree that we may do so, subject to your right to cancel your ePHR account at any time. Content does not include information you
post to your ePHR.
5. Your ePHR Account
To start using the ePHR, an individual account must be created. Once an account is established, a personal health record will be created for that account holder. The account holder may then
create multiple health records for family members with primary immunodeficiencies, based on his or her account, as provided in this Section 5.
To create an individual personal account in the ePHR, you must be 18 years of age or older. For children under 18 years of age, a parent, legal guardian, or other responsible adult must create
a custodial account and personal health record first for themselves, and then create a personal health record for their child or ward within their account. Children between the ages of 13 and 17
must access their ePHR while under the supervision of a parent, legal guardian, or other responsible adult. Children under the age of 13 are not allowed to visit or use the ePHR Site.
When you register to create your ePHR account, you will create a User ID and password. Together, your User ID and password constitute the authentication credentials ("Credentials") you will use
to sign on to your ePHR in the future. It is your responsibility to protect your Credentials from unauthorized access and use. If you believe the security of your Credentials have been compromised,
please contact ePHR Support at 410-321-6647 or firstname.lastname@example.org. Should you lose or misplace your Credentials, you should immediately change your password, to avoid unauthorized access to your
6. Your Use of your ePHR Account
You may choose to grant access privileges to your physicians, family members or others, permitting them to view your ePHR. All third parties granted access to your ePHR will appear on a list in
your ePHR unless you remove them. You can revoke such access privileges at any time by deleting a party from your list. The individuals authorized by you to access your ePHR may review your ePHR
but cannot delete or change records previously input by you (or by any other person signing in using your Credentials). No one other than you, or someone using your Credentials, is permitted to
make changes or updates to your ePHR. You are responsible for all uses of your IDF ePHR account using your Credentials, including use by anyone who signs in using your Credentials, whether or not
you have given your permission for such use. You are solely responsible for ensuring that your Credentials remain confidential.
You may use the Site and your ePHR account only for lawful, non-commercial purposes. You may not use the Site or the ePHR in a manner that could impair or do any harm to our servers, network or
technology we use to provide the Site or the ePHR. You may not interfere with anyone else's use of the Site, or take actions that limit the Site's effectiveness for other users. You may not attempt
to gain unauthorized access to any protected areas or other persons' ePHR account by any means. We may terminate or suspend access to your ePHR if we have a basis to believe that you are engaging
in such actions. We may also pursue, any remedies, including legal action, to prevent the violation of other ePHR account holders privacy and to enforce these Terms of Service. The accuracy of any
records you store in your ePHR account is your sole responsibility, and we assume no liability for the accuracy of your information.
You shall notify IDF immediately of any unauthorized use or threat of unauthorized use of your account or the Site or of any other breach or potential breach of security known to you with
respect to your account or the Site, including without limitation any loss or compromise of any credentials, and will cooperate with IDF in every reasonable way to help IDF prevent the further
unauthorized use, threat of unauthorized use, disclosure or threat of disclosure regarding the Site, your account and/or your credentials. You agree that immediately upon termination of your right
to use the Site, or upon any earlier demand by IDF at any time, you will cease all access and/or use of the Site, and will not attempt to access and/or use the Site.
7. We Will Report Any Breach of "Unsecured PHR Information" to You, as Required By Law
In the event that unsecured PHR Information posted on your ePHR account which is not protected by the use of a technology or methodology approved under applicable law, such as encryption, is
subject to unauthorized acquisition, use, or disclosure which compromises the security or privacy of the information, as required by law, you will be promptly notified. Unsecured PHR Information is
generally defined as information collected from you or any other persons with access to your ePHR account, which relates to your past, present, or future physical or mental health or condition; the
provision of health care to you; or the past, present, or future payment for the provision of health care to you; and that identifies you or from which your identity can reasonably be expected to
8. We May De-Identify Information that You Post to your ePHR account
You agree that IDF may "de-identify" the medical information that you post to your account ("De-identified Information") and use the De-identified Information as it determines, including for
Primary Immunodeficiency Diseases research, advocacy or commercial purposes. You also agree that IDF owns and will own all De-identified Information and derivations of such information. De-
identification involves a process of eliminating or masking any information that directly or indirectly identifies you personally, such as your name, address, elements of your date of birth and
similar information. Our de-identification process will follow the standards that apply under the federal Health Insurance Portability and Accountability Act ("HIPAA") law and regulations, although
as noted in Section 1 above, we are not healthcare providers, nor are we otherwise subject to HIPAA or state medical information privacy laws.
9. We Make No Warranties
WE PROVIDE THE SITE, YOUR EPHR ACCOUNT, AND ALL SERVICES ACCESSIBLE ON OR THROUGH THIS SITE “AS IS”, “WITH ALL FAULTS” AND “AS AVAILABLE”. WE AND OUR AFFILIATES, PARTNERS, TECHNOLOGY PROVIDERS
OR OTHER SUPPLIERS OR SUBCONTRACTORS MAKE NO EXPRESS OR IMPLIED WARRANTIES OR GUARANTEES ABOUT THE EPHR, YOUR EPHR ACCOUNT, THE SITE OR ANY INFORMATION, COMMUNICATIONS OR OTHER SERVICES PROVIDED
THROUGH THE SITE OR IN CONNECTION WITH YOUR EPHR ACCOUNT (COLLECTIVELY, THE “SERVICES”). TO THE EXTENT PERMITTED BY LAW, WE AND OUR AFFILIATES, PARTNERS, TECHNOLOGY PROVIDERS OR OTHER SUPPLIERS OR
SUBCONTRACTORS DISCLAIM ALL IMPLIED WARRANTIES, INCLUDING ALL WARRANTIES THAT THE SERVICES ARE MERCHANTABLE, OF SATISFACTORY QUALITY, ACCURATE, FIT FOR A PARTICULAR PURPOSE OR NEED, OR NON-
INFRINGING OF THE RIGHTS OF THIRD PARTIES. WE AND OUR AFFILIATES, PARTNERS, TECHNOLOGY PROVIDERS OR OTHER SUPPLIERS OR SUBCONTRACTORS DO NOT GUARANTEE THAT THE RESULTS THAT MAY BE OBTAINED FROM THE
USE OF THE SERVICES WILL BE EFFECTIVE, RELIABLE, AND ACCURATE OR WILL MEET YOUR REQUIREMENTS. WE AND OUR AFFILIATES, PARTNERS, TECHNOLOGY PROVIDERS OR OTHER SUPPLIERS OR SUBCONTRACTORS DO NOT
GUARANTEE THAT YOU WILL BE ABLE TO ACCESS OR USE THE SERVICES (EITHER DIRECTLY OR THROUGH THIRD-PARTY NETWORKS) AT TIMES OR LOCATIONS OF YOUR CHOOSING WITHIN THE UNITED STATES OR FROM OUTSIDE THE
UNITED STATES. YOU USE THE SERVICES AT YOUR OWN RISK. YOU MAY HAVE ADDITIONAL CONSUMER RIGHTS UNDER YOUR LOCAL LAWS THAT THIS AGREEMENT CANNOT CHANGE.
10. Limitation of Remedies and Liability
YOUR SOLE AND EXCLUSIVE REMEDY FOR ANY DISPUTE WITH US, OUR AFFILIATES, PARTNERS, TECHNOLOGY PROVIDERS OR OTHER SUPPLIERS OR SUBCONTRACTORS IS THE CANCELLATION OF YOUR EPHR ACCOUNT. IN ADDITION,
WE AND OUR AFFILIATES, PARTNERS, TECHNOLOGY PROVIDERS OR OTHER SUPPLIERS OR SUBCONTRACTORS SHALL NOT UNDER ANY CIRCUMSTANCES BE LIABLE FOR ANY INDIRECT, SPECIAL, INCIDENTAL, CONSEQUENTIAL OR
EXEMPLARY DAMAGES EVEN IF WE KNEW OR SHOULD HAVE KNOWN OF THE POSSIBILITY OF SUCH DAMAGES. BECAUSE SOME STATES OR JURISDICTIONS DO NOT ALLOW THE EXCLUSION OR THE LIMITATION OF LIABILITY FOR
CONSEQUENTIAL OR INCIDENTAL DAMAGES, IN SUCH STATES OR JURISDICTIONS, OUR LIABILITY, AND OUR LIABILITY AND THAT OF WE AND OUR AFFILIATES, PARTNERS, TECHNOLOGY PROVIDERS OR OTHER SUPPLIERS OR
SUBCONTRACTORS SHALL BE LIMITED TO THE MAXIMUM EXTENT PERMITTED BY LAW.
WITHOUT LIMITING THE GENERALITY OF THE FOREGOING GENERAL LIMITATIONS ON LIABILITY AND SUBJECT TO THE GENERAL LIMITATIONS AND CONDITIONS STATED IN THAT SECTION IDF, OUR AFFILIATES, PARTNERS,
TECHNOLOGY PROVIDERS OR OTHER SUPPLIERS OR SUBCONTRACTORS HEREBY SPECIFICALLY DISCLAIMS ANY LIABILITY TO YOU, THE ACCESSORS OF YOUR HEALTH RECORDS STORED IN YOUR EPHR ACCOUNT, OR ANY OTHER PARTY
FOR ANY DAMAGES OR INJURY THAT MAY RESULT FROM THE USE OF OR INABILITY TO USE YOUR HEALTH RECORDS STORED ON THE EPHR, INCLUDING BUT NOT LIMITED TO ANY DAMAGES OR INJURY CAUSED BY FAILURE OF
PERFORMANCE, ERROR, OMISSION, INTERRUPTION, DELETION, DEFECT, MODIFICATION, DELAY IN OPERATION OR TRANSMISSION, COMPUTER VIRUS, COMMUNICATION SERVICE FAILURE, THEFT OR DESTRUCTION OR UNAUTHORIZED
ACCESS TO, ALTERATION OF, OR USE OF PERSONAL HEALTH RECORDS STORED ON THE EPHR, UNDER ANY LEGAL THEORY OR CAUSE OF ACTION. NEITHER WE, OUR AFFILIATES, PARTNERS, TECHNOLOGY PROVIDERS OR OTHER SHALL
BE LIABLE FOR ANY DIRECT, INDIRECT, INCIDENTAL, CONSEQUENTIAL, SPECIAL OR PUNITIVE DAMAGES, INCLUDING, BUT NOT LIMITED TO THOSE ARISING OUT OF THE USE THE EPHR, OR INABILITY OF YOU OR ANY
AUTHORIZED USER TO GAIN ACCESS TO OR USE THE HEALTH RECORDS OR OTHER INFORMATION STORED ON THE EPHR OR THE USE OF THE INFORMATION STORED ON YOUR EPHR BY YOU, YOUR PRIMARY PHYSICIAN OR ANY OTHER
INDIVIDUAL OR ENTITY.
We may terminate your ePHR account if we determine that there has been a violation of these Terms of Service, or other policies and terms posted on the Site, whether by you or by someone using
your Credentials. We will attempt to notify you in advance of such termination, to the extent we determine that it is reasonable to do so. Your right, and the right of others that you may
authorize, to access and use the Site and your ePHR account will end once your account is terminated, and any data you have stored on your ePHR personal health record may be unavailable later,
unless we are required to retain it by law. You may terminate your account at any time and for any reason, whereupon you shall have thirty (30) days to print, export or download your information if
you wish to preserve anything you have stored in your ePHR. All of the personal information stored in your ePHR will be purged immediately after such thirty (30) day period following your notice
In addition, we may terminate the ePHR service at any time on thirty (30) days notice. You may use the properties of the Site to print, export or download your information, if you wish to
preserve anything you have stored in your ePHR. All of the personal information stored in your ePHR will be purged after the 30 day period following IDF’s notification of such termination.
12. Electronic Contracting and Notices
You are legally bound by your electronic signature exactly as you would be legally bound to your physical signature on a paper version of these Terms of Service or any other contractual. You
agree that we may send to you in electronic form any privacy or other notices, disclosures, reports, documents, communications or other records regarding the Services (collectively, "Notices"). We
can provide you with Notices by posting the Notice on the Site. Notice from us is effective when posted by us on the Site, regardless of whether you read the Notice. In addition, we may, at our
sole option, provide a Notice or provide an additional copy of a Notice posted on the Site, by sending it to the e-mail address associated with your ePHR account, in which case the Notice will be
effective on the earlier of the date of posting on the Site or the date we send a copy to your email address.
13. Surveys or Studies
From time to time, IDF may wish to conduct surveys or studies to better understand Primary Immunodeficiency Diseases. Your participation will greatly assist us in this important undertaking. You
agree that we may use the information you provide to contact you in the future about whether or not you wish to participate in surveys or studies that may be of interest and importance to you.
14. Copyright and Other Intellectual Property
Site Ownership. The Site and all Site content, and all intellectual property rights therein is the property of IDF or its licensors. Product and company names mentioned herein may be the
trademarks of their respective owners. The Site, including all Site content, is only for your personal, non-commercial use. You will abide by any and all additional copyright notices, information,
or restrictions contained in any content on the Site. Any copying, republication, or redistribution of Site content, including by caching, framing, or similar means, is expressly prohibited without
the prior written consent of IDF or the respective intellectual property rights holder identified in the subject content.
Copyright Infringement Claims. IDF respects the intellectual property rights of others and expects our users to do the same. The policy of IDF is to terminate the accounts of repeat
copyright offenders and other users who infringe upon the intellectual property rights of others. If you believe that your work has been copied in a way that constitutes copyright infringement,
please provide IDF's Designated Copyright Agent, identified below, with the following information required by the Online Copyright Infringement Liability Limitation Act of the Digital Millennium
Copyright Act (“DMCA”), 17 U.S.C. § 512: (1) a physical or electronic signature of a person authorized to act on behalf of the owner of an exclusive right that is allegedly infringed; (2)
identification of the copyright work claimed to have been infringed, or, if multiple copyrighted works at a single online site are covered by a single notification, a representative list of such
works at that site; (3) identification of the material that is claimed to be infringing or to be the subject of infringing activity and that is to be removed or access to which is to be disabled,
and information reasonably sufficient to permit us to locate the material; (4) information reasonably sufficient to permit us to contact the complaining party; (5) a statement that the complaining
party has a good-faith belief that use of the material in the manner complained of is not authorized by the copyright owner, its agent, or the law; (6) a statement that the information in the
notification is accurate, and under penalty of perjury, that the complaining party is authorized to act on behalf of the owner of an exclusive right that is allegedly infringed; and (7) any other
materials or information as may be required by the DMCA as amended from time to time.
Copyright Agent. Pursuant to the DMCA, written notification of claimed copyright infringement must be submitted to the IDF Designated Copyright Agent using the following contact information:
110 West Road, Suite 300, Towson, MD, 21204
Phone: (410) 321-6647
Fax: (410) 321-9165
ALL INQUIRIES NOT RELEVANT TO THE ABOVE PROCEDURE WILL RECEIVE NO RESPONSE.
15. Dispute Resolution.
Binding Arbitration. You and IDF each agree to submit to binding arbitration in the event of a dispute, controversy or claim (each, a “Dispute”) arising out of or in connection with
these Terms of Service, your or IDF’s rights and obligations under the Terms of Service, the Site, the use of the Site, and/or the information, services and/or products that may be provided by or
through or in connection with the Site. The arbitration will be held in the State of Maryland before one arbitrator on an individual basis and not as a class action. You expressly waive any right
you may have to arbitrate a dispute as a class action. You also expressly waive your right to a jury trial. At the option of the first party to commence an arbitration, the arbitration will be
administered either by the National Arbitration Forum, Box 50191, Minneapolis, MN 55405-0191 (www.arb-forum.com), or JAMS, Two Embarcadero Center Suite 1100 San Francisco, CA 94111
(www.jamsadr.com). In the event you are the first party to commence an arbitration, and you fail to select an arbitration organization within 30 days after providing notice to IDF of such
arbitration, IDF may select the organization. You may obtain a copy of the rules of each organization by contacting the organization. In the event that any Dispute cannot be submitted to binding
arbitration pursuant to the rules of any such organization, such event shall not affect the enforceability of this clause so long as the Dispute may be submitted to binding arbitration with one of
the organizations. You and IDF shall agree on one arbitrator to conduct the arbitration and the arbitrator shall be selected pursuant to the applicable rules. Each party shall be responsible for
its own attorney, expert and other fees, unless such fees are awarded by the arbitrator to the prevailing party. Notwithstanding anything to the contrary in this Section, to the extent you have in
any manner violated or threatened to violate IDF’s intellectual property rights, IDF may seek (and you will not contest) injunctive or other appropriate relief in any state or federal court in the
State of Maryland, and you consent to exclusive jurisdiction and venue in such courts.
Arbitration Final. The arbitrator's award is final and binding on all parties. The Federal Arbitration Act, and not any state law concerning arbitration, governs all arbitration under
this clause. Any court having jurisdiction may enter judgment on the arbitrator's award. If any part of this clause, other than waivers of class action rights, is deemed or found to be
unenforceable for any reason, the remainder shall remain enforceable. Notwithstanding anything to the contrary contained herein, if the waiver of class action rights contained herein is not
enforceable as to any person or persons, such non-enforceability shall apply to such person or persons only, and all other persons shall continue to be governed by the Arbitration Clause.
Choice of Law; Jurisdiction and Venue; Waiver of Trial By Jury. To the maximum extent permitted by law, this Agreement is governed by the laws of the State of Maryland, excluding any law or
conflicts of law principle that would apply the law of another jurisdiction. To the extent a Dispute is not governed by the Arbitration Clause, you hereby consent to the exclusive jurisdiction and
venue of courts in the State of Maryland in all disputes arising out of or relating to the use of the Site or under this Agreement; provided, however, that in the event IDF is sued or joined by a
third party in any other court or in any other forum in respect of any matter which may give rise to a claim by IDF hereunder, you consent to the jurisdiction of such court or forum over any claim
which may be asserted by IDF therein. You irrevocably consent to the exercise of personal jurisdiction by such courts in any such action. In addition, and notwithstanding the foregoing, you
irrevocably waive, to the fullest extent permitted by law, any objection that you may now or hereafter have to the laying of the venue of any such suit, action or proceeding brought in any such
court and any claim that any such suit, action or proceeding brought in any such court has been brought in an inconvenient forum. Final judgment in any such suit, action or proceeding brought in
any such court shall be conclusive and binding upon you and may be enforced in any court in which you are subject to a jurisdiction by a suit upon such judgment. Use of the Site is unauthorized in
any jurisdiction that does not give effect to all provisions of these terms and conditions, including without limitation this paragraph. To the extent a claim is not governed by the Arbitration
Clause, IDF and you each hereby waive the right to a trial by jury in any court and in any suit, action or proceeding, whether in tort, contract, or otherwise, in which any such party is a party,
as to any claim arising out of or in connection with this Agreement, your or IDF’s rights and obligations under this Agreement, the Site, use of the Site, and/or the services and/or products that
may be provided by or through or in connection with the Site.
Viewing Outside the United States. IDF makes no claims that the Site may be lawfully viewed, accessed or used outside the United States. Access or use of the Site may not be legal by
certain persons or in certain countries. If you access or use the Site from outside of the United States, you do so at your own risk and you are responsible for compliance with the laws of your
16. Entire Agreement
other Services provided at this Site and supersedes all previous agreements relating to its subject matter. These Terms of Service may not be revised except in writing and signed
by an authorized IDF staff member. If any part of these Terms of Service is held invalid or unenforceable, that portion shall be construed in a manner consistent with applicable
law to reflect, as nearly as possible, the original intentions of the parties, and the remaining portions shall remain in full force and effect.
These Terms of Service Were Last Updated On March 16, 2015