Terms of Use and Privacy Policies
Terms of Use / Privacy Policies


The HAEA.org and HAEACafe.org websites are provided by the US Hereditary Angioedema Association for educational and advocacy purposes only.

Application of Terms of Use
These “Terms of Use” tell you the terms of use on which you may make use of our websites, whether as a guest or registered user. Use of our websites include accessing, browsing, searching, registering or using our forums. We may update these Terms of Use from time to time.

By using our websites, you confirm that you accept these Terms of Use and that you agree to comply with them. If you do not agree to these Terms of Use, you must not use our websites.

Prohibited Uses

You may use our websites only for lawful purposes. You may not use our websites:
• In any way that breaches any applicable local, national or international law or regulation.

• In any way that is unlawful or fraudulent, or has any unlawful or fraudulent purpose or effect.

• To knowingly transmit any data, send or upload any material that contains viruses, Trojan horses, worms, time-bombs, keystroke loggers, spyware, adware or any other harmful programs or similar computer code designed to adversely affect the operation of any computer software or hardware.


Our websites contain general information only. They are not intended to amount to advice on which you should rely. In particular, information we may provide is not a substitute for professional medical care by a qualified doctor or other healthcare professional.

If you area a patient, you should always check with your doctor if you have any concerns about your condition or treatment and before taking, or refraining from, any action on the basis of the content on our websites.

If you are a healthcare professional, and information provided (including any professional reference material) is intended to support, not replace, your own knowledge, experience and judgement.

Although we make reasonable efforts to update the information on our websites, we make no representations, warranties or guarantees, whether express or implied, that the content on our websites is accurate, complete or up-to-date.

Intellectual Property

Materials on our websites are owned by the US HAEA and are protected by copyright laws. All such rights are reserved.

You may download and/or print off one copy of extracts of any page(s) from our websites for your personal use, and you may (in a non-commercial context) draw the attention of others to content posted on our Websites.

You must not modify the paper or digital copies of any materials you have printed off or downloaded in any way, and you must not further use any illustrations, photographs, video or audio sequences or any graphics separately from any accompanying text.

The US HAEA (and any identified contributors), as the authors of content on our website, must always be acknowledged.

Using online forums –

We have the right to disable any user identification code or password, whether chosen by you or allocated by us, at any time, if in our reasonable opinion you have failed to comply with any of our Terms of Use.

You can retrieve, change or request that we delete the details you place with us. You will only receive emails that you have agreed to, or those relating to administration purposes. We will not provide your personal data to any third party for any commercial or any other purpose.

You must only use our websites for lawful purposes and you must not infringe the rights of other users of this site or prevent their enjoyment of it.

If you are under 16 you need to get permission from a parent or guardian before providing us with any personal details. The use of any of our interactive services by a minor is subject to the consent of his or her parent or guardian. We advise parents who permit their children to use any interactive service to educate their children regarding online safety.


You must comply with the spirit and the letter of the following standards.

Contributions must:

• Be constructive and polite, not mean-spirited or contributed with the intention of causing trouble or ‘trolling’.

Contributions must not:

• Contain any material which is obscene, sexually explicit, offensive, hateful or inflammatory or promote violence.

• Promote discrimination based on race, sex, religion, nationality, disability, sexual orientation or age.

• Infringe any copyright, database right or trade mark.

• Be likely to deceive any person.

• Promote any illegal activity.

• Be threatening, defamatory, abuse or invade another's privacy, or cause annoyance, inconvenience or needless anxiety.

• Be likely to harass, upset, embarrass, alarm or annoy any other person.

• Be used to impersonate any person, or to misrepresent your identity or affiliation with any person.

• Give the impression that they emanate from the US HAEA if this is not the case.

• Advocate, promote or assist any unlawful act such as (by way of example only) copyright infringement or computer misuse.

• Include any advertising or be made for any commercial purpose.

You represent that any online contribution you make will comply with the standards set out above, and you will be liable to us and be responsible for any loss or damage we suffer as a result of your breach of this representation.

For your safety we advise that you never reveal any personal information about yourself or anyone else (for example: telephone number, home address or email address).

While the administrators and moderators of our web sites will attempt to remove or edit any generally objectionable material as quickly as practicable, it is not possible to review every message.

Suspension and Termination

We will determine, at our discretion, whether there has been a breach of our Terms of Use through your use of our website. When a breach of these terms has occurred, we may take such action as we deem appropriate, which may include our taking all or any of the following actions:

• Immediate, temporary or permanent withdrawal of your right to use our websites and/or forums

• Issuance of a warning to you.

• Legal proceedings against you for reimbursement of all costs on an indemnity basis (including, but not limited to, reasonable administrative and legal costs)

• Further legal action against you.

• Disclosure of such information to law enforcement authorities as required by law.

We exclude liability for actions taken in response to breaches of this acceptable use policy. The responses described in this policy are not limited, and we may take any other action we reasonably deem appropriate.


We have the right to remove any posting you make on our websites if, in our opinion, your post does not comply with the content standards set out in these Terms of Use.

Third Party Links and Resources

Our websites may contain links to other websites and resources operated by third parties. These links are provided for your reference only. We do not control third party websites or resources, and are not responsible for their availability or content.

Our inclusion of links to any third party websites does not imply any endorsement of the material on such websites or any association with their operators.

Where our site contains links to other sites and resources provided by third parties, these links are provided for your information only. We have no control over the contents of those sites or resources.

Linking to our Websites

You may link to our websites, provided you do so in a way that is fair and legal and does not damage our reputation or take advantage of it.

You must not establish a link in such a way as to suggest any form of association, approval or endorsement on our part where none exists. Our websites may not be framed in/on any other site.

We reserve the right to withdraw linking permission without notice.

Limitations Of Liability

Please read this section carefully as it sets out the limits of our liability to you in relation to your use of the websites.

To the extent permitted by law, we exclude all conditions, warranties, representations or other terms which may apply to our websites or any content on therm, whether express or implied.

We will not be liable to any user for any loss or damage, even if foreseeable, arising under or in connection with:

• use of, or inability to use, our websites; or

• use of or reliance on any content displayed on our websites (regardless of the origins of such content).

You agree not to use our sites for any commercial or business purposes, and we have no liability to you for any loss of profit, loss of business, business interruption, or loss of business opportunity.

We assume no responsibility for the content of websites linked to or from our websites. Such links should not be interpreted as endorsement by us of those linked websites. We will not be liable for any loss or damage that may arise from your use of them.

We will not be liable for any loss or damage caused by a virus, distributed denial-of-service attack, or other technologically harmful material that may infect your computer equipment, computer programs, data or other proprietary material due to your use of our websites, or to your downloading of any content from them, or on any website(s) linked to or from them.

You acknowledge that we have made our websites available to you in reliance upon these Terms of Use and in particular these Limitations of Liability.

No failure or delay by us to exercise any right or remedy provided under these Terms of Use or by law shall constitute a waiver of that or any other right or remedy, nor shall it prevent or restrict the further exercise of that or any other right or remedy. No single or partial exercise of such right or remedy shall prevent or restrict the further exercise of that or any other right or remedy.

Any rights not expressly granted herein are reserved.

Information We Collect

We may collect information from you when you provide it voluntarily, place an order, subscribe to a newsletter, post a message or any content, participate in a chat, or fill out a form.

When ordering or registering on our sites, as appropriate, you may be asked to enter your: name, e-mail address, mailing address, phone number or credit card information, other personal information, and/or health information. If you choose, you may visit our sites anonymously.

How Your Information May Be Used

Any of the information we collect from you may be used in one of the following ways:

  • To improve our websites

  • To improve our services

  • To process transactions
    Your information, whether public or private, will not be sold, exchanged, transferred, or given to any other company for any reason whatsoever, without your consent, other than for the express purpose of delivering the purchased product or service requested.

  • To administer a contest, promotion, survey or other site feature

  • To send periodic emails
    The email address you provide to us will only be used to send you information and updates pertaining to services you have subscribed to, a question you'd like a response to, or an order you have placed.

    If you decide to opt-in to our mailing list, you will receive emails that may include news, updates, event confirmations, product or service information, etc. You may unsubscribe at any time.

Protecting Your Information

We implement a variety of security measures to maintain the safety of any personal information you've provided us.

All supplied sensitive / credit information is encrypted, and only accessible by those authorized with special access rights to such systems. Those individuals are required to keep the information confidential.


Being a US-targeted organization, we are not required to comply with EU cookie laws, and have a separate cookie policy. We do use cookies in some cases, to save you some key strokes and provide you with the best user experience. Your use of this web site acknowledges your acceptance of these terms.

Sharing Information with Outside Parties

We do not sell, trade, or otherwise transfer to outside parties your personally identifiable information. This does not include trusted third parties who assist us in operating our websites, conducting our business or research, or servicing you, so long as those parties agree to keep this information confidential. We may also release your information when we believe release is appropriate to comply with the law, enforce our site(s) policies, or protect ours or others rights, property, or safety.

This online privacy policy applies only to information collected through our websites and not to information collected offline.

Your Consent

By using our sites, you consent to our privacy policies.

Changes to our Privacy Policies

If we decide to change our privacy policies, we will post those changes on this page.

If you have any questions regarding our privacy policies you may contact us.