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Privacy Policy

We know that in this digital age, your privacy is important. This Privacy Policy reflects our commitment to protect personal data and the choices we offer you regarding how your data is used. We welcome you to read more about how we keep your information safe, as well as how you can exercise your rights. In addition, our Privacy policy covers our treatment of data that may be personal to you.

  1. We will review, update, and amend these policies from time to time consistent with our business needs and technology. We encourage you to check back periodically for new updates or changes. Your continued use of the service makes up your acceptance of any change to this Privacy Policy. We are the data controller of your information. We handle and process all data on behalf of our customers

  2. You may likewise decide not to give us “discretionary” Personal Data; however please remember that without it, we will most likely be unable to provide you with the full scope of our administrations or with the best client experience when utilizing our Services.
  3. This Privacy Policy (“Privacy Policy”) describes how The Fibromuscular Dysplasia Society of America will gather, use, and maintain your Personal Information on the fmdsa.org. It will also explain your legal rights with respect to that information.

  4. By using The Fibromuscular Dysplasia Society of America (FMDSA)website or services, you confirm that you have read and understand this Privacy Policy, and our Terms (together referred to herein as the “Agreement”). The Agreement governs the use of fmdsa.org. FMDSA will collect, use, and maintain information consistent with the Agreement.

We recommend that you read this Policy in full to ensure you are fully informed. However, if you only want to access a particular section of this Policy, then you can click on the relevant link below to jump to that section.

What private data do we collect from the people who visit our website?

When enlisting on our site, to donate or buying Products, as suitable, you could be approached to type in your name, email, postage information, payment information, or different subtleties to assist you with your experience.

When you create an account and use the Services, including through a third-party plaRorm, we collect any data you provide directly, including:

  1. Account Data: To use certain features (like Paid or unpaid Services), you need to create a user account. When you create or update your account, we collect and store the data you provide, like your email address, password, gender, and date of birth, and assign you a unique identifying number (“Account Data”).

  2. Personal Data: Personal Data is information that can be used to identify you specifically, including your name, email address, telephone number, or demographic information like your hometown. You consent to give us this information by providing it to us voluntarily on our website or any mobile application. Your decision to disclose this data is entirely voluntary. You are under no obligation to provide this information, but your refusal may prevent you from accessing certain benefits from our website.

  3. Financial Data: Financial data is related to your payment methods, such as credit card or bank transfer details. We collect financial data to allow you to purchase, order, return or exchange products or services from our website and any related mobile apps. We store limited financial data. Most financial data is transferred to our payment processors, Blackbaud/eTapestry and PayPal, and you should review these processors’ Privacy Policy to determine how they use, disclose, and protect your financial data.
    o As a courtesy, PayPal Privacy Policy can be found here https://www.paypal.com/us/ webapps/mpp/ua/privacy-full

  4. Contact information. An Authorized User is required to provide some contact information (e.g., an email address) when making an account on the Services.

Do Not Track  

Currently, various browsers — such as Internet Explorer, Firefox, and Safari — offer a “do not track” or  “DNT” option that relies on a technology known as a DNT header, which sends a signal to Web sites’  visited by the user about the user’s browser DNT preference setting. FMDSA does not currently commit  to responding to browsers’ DNT signals with respect to the Company’s Web sites, in part, because no  

common industry standard for DNT has been adopted by industry groups, technology companies or  regulators, including no consistent standard of interpreting user intent. FMDSA takes privacy and  meaningful choice seriously and will make efforts to continue to monitor developments around DNT  browser technology and the implementation of a standard.  

How do we use your details?  

We may utilize the data we procure from you when you enlist, make a buy, join our bulletin, respond to  an examination or promoting correspondence, peruse the site, or utilize specific other site includes in  the following ways:  

  1. Create your account; and  
  2. Correspond with you; and  
  3. Compile anonymous statistical data for our own use or for a third party’s use; and 
  4. Assist law enforcement as necessary; and  
  5. Analyze trends to improve our website and offerings.  
  6. To fulfill or meet the reason you provided the information (e.g., to help provide our Site services  to you).  
  7. To provide certain features or functionality of the services on the site.  
  8. To create, maintain, customize, and secure your account with us.  
  9. To provide you with support, to communicate with you and respond to your inquiries, including  to investigate and address your concerns and monitor and improve our responses.  
  10. To help maintain the safety, security, and integrity of our site, services, databases, and other  technology assets and business.  
  11. To prevent illegal activity, fraud, and abuse. 
  12. Where we must play out the agreement we are going to go into or have gone into with you
  13. To help our site that will be ready to serve you better.

How we use cookies  

We use cookies and similar technologies for several purposes, depending on the context or service,  including:  

  1. Recognizing you if you sign in to use our offerings. This allows us to provide you with  recommendations, display personalized content, and provide other customized features and  services.  
  2. Keeping track of your specified preferences. This allows us to honor your likes and dislikes, such  as your language and configuration preferences.  
  3. Detecting and preventing fraudulent activity and improving security.  
  4. Conducting research and diagnostics to improve our offerings. 
  5. Reporting, which allows us to measure and analyze the performance of our offerings

First-party cookies  

  1. Strictly Necessary cookies: These cookies are necessary for the website to function and cannot  be switched off in our systems. They are often set in response to actions made by you, which amount to a request for services, such as setting your privacy preferences, logging in or filling in  forms.

  2. Functional cookies: These cookies enable the website to provide enhanced functionality and  personalization. They may be set by us or by third party providers whose services we have  added to our pages.  

  3. Performance cookies: These cookies allow us to count visits and traffic sources so we can  measure and improve the performance of our site. They help us to know which pages are the  most and least popular and see how visitors move around the site. 

  4. Targeting cookies: These cookies may be set through our site and may be used to build a profile  of your interests and show you relevant adverts on other sites.

Third-party cookies  

In addition to our own cookies, we may also use various third-party cookies to report usage statistics of  the Service, deliver advertisements on and through the Service, and so on. These cookies may be set  through our site by our advertising partners. They may be used by those companies to build a profile of  your interests and show you relevant adverts on other sites.  

What are your choices regarding cookies?  

Cookie Preferences on FMDSA website: Our cookies allow you to take advantage of some essential and  useful features. Blocking some types of cookies may impact your experience of our sites. You can change  your cookie preferences at any time by clicking ‘Cookie Preferences’ in the footer of the FMDSA website.  

Browser settings: You can also manage browser cookies through your browser settings. The ‘Help’  feature on most browsers will tell you how to remove cookies from your device, prevent your browser  from accepting new cookies, how to have the browser notify you when you receive a new cookie, how to  disable cookies, and when cookies will expire. Check the support site for your browser to understand  privacy settings available to you. If you block or reject some of our cookies through your browser’s  settings, you might not be able to use certain offerings that require you to sign-in to an account and  some features and services may not work. You might also have to manually adjust your preferences or  settings every time you visit our website.

Google Analytics Cookies  

We use Google Analytics to investigate the utilization of our site of users and visitors. Google Analytics  assembles data about site use through cookies. The data assembled identifying with our site is utilized to  make reports about the utilization of our site.

California Consumer Rights

The California Consumer Privacy Act provides specific rights to those who live in California. If you are a  California-based consumer, as that term is defined under California law, this section shall apply in  addition to all other applicable rights and information contained in this Statement.

  1. You have the right to request that we provide you with information about what personal  information we collect, use, and disclose.  
  2. You have the right to request that we delete personal information we, or our service providers,  store about you.  
  3. We will not discriminate or retaliate against you if you elect to exercise any rights under this  section of our Privacy Statement.  
  4. You may request that we not sell your personal information. As noted above, we do not sell your  personal information and we only share your personal information with third parties, as  described in this Statement.  
  5. You have the right to designate an authorized agent to make a request on your behalf. Please see  the Identity Verification Requirement below for information on our process for verifying that we  have received a legally valid request.  
  6. If you are a California consumer and have additional questions based on this section of our  Privacy Statement or wish to submit a request to request that we not share your information  with third parties, please contact us by email or through contact us page.  
  7. See more at https://consumercal.org/about-cfc/cfc-education-foundation/california-online privacy-protection-act-caloppa-3/

According to caloppa, we agree to the following:  

  1. Users can visit our site anonymously.  
  2. Once this online privacy policy is established, we will put a link to it on our website, on the first  significant web page acer getting into our website. 
  3. Our ONLINE PRIVACY POLICY link includes the term ‘Privacy’ and can certainly be on the page  given above.  
  4. You’ll be notified of any ONLINE PRIVACY POLICY changes: 
  5. Via Email

Coppa (children online privacy protection action)  

With regards to the assortment of private information from children under age 13 years, the Children’s  Online Privacy Protection Act (COPPA) puts parents in charge. The Federal Trade Commission, United  States’ consumer safety firm, enforces the COPPA Guideline, which spells out what providers of websites  and online services should do to safeguard children privatizes and security online. For more Details Click  Here or below link  

https://www.cc.gov/enforcement/rules/rulemaking-regulatory-reform-proceedings/childrens-online privacy-protection-rule  

GDPR-Customer data processing appendix:  

Customer Data” means any personal data that FMDSA processes on behalf of Customer via the Services,  as more particularly described in this DPA.  

“Data Protection Laws” means all data protection laws and regulations applicable to a party’s processing  of Customer Data under the Agreement, including, where applicable, EU Data Protection Law and Non EU Data Protection Laws.  

GDPR-EU data protection law 

“EU Data Protection Law” means all data protection laws and regulations applicable to Europe, including  (i) Regulation 2016/679 of the European Parliament and of the Council on the protection of natural  persons with regard to the processing of personal data and on the free movement of such data (General  Data Protection Regulation) (“GDPR“); (ii) Directive 2002/58/EC concerning the processing of personal  data and the protection of privacy in the electronic communications sector; (iii) applicable national  implementations of (i) and (ii); and (iv) in respect of the United Kingdom (“UK“) any applicable national  legislation that replaces or converts in domestic law the GDPR or any other law relating to data and  privacy as a consequence of the UK leaving the European Union.  

“Europe” means, for the purposes of this DPA, the European Union, the European Economic Area and/or  their member states, Switzerland, and the United Kingdom.  

“Non-EU Data Protection Laws” means the California Consumer Privacy Act (“CCPA”); the Canadian  Personal Information Protection and Electronic Documents Act (“PIPEDA”); and the Brazilian General  Data Protection Law (“LGPD “), Federal Law no. 13,709/2018.  

“SCCs” means the standard contractual clauses for processors as approved by the European Commission  or Swiss Federal Data Protection Authority (as applicable), which shall be applied only to transfers of  Customer Data from the European Union.  

“Sensitive Data” means (a) social security number, passport number, driver’s license number, or similar  identifier (or any portion thereof); (b) credit or debit card number (other than the truncated (last four  digits) of a credit or debit card); (c) employment, financial, genetic, biometric or health information; (d)  racial, ethnic, political or religious affiliation, trade union membership, or information about sexual life or  sexual orientation; (e) account passwords; or (f) other information that falls within the definition of  “special categories of data” under applicable Data Protection Laws.

“Services Data” means any data relating to the Customer’s use, support and/or operation of the  Services, including information relating to volumes, activity logs, frequencies, bounce rates or other  information regarding emails and other communications Customer generates and sends using the  Services.

  1. Parties’ roles: If EU Data Protection Law or the LGPD applies to either party’s processing of  Customer Data, the parties acknowledge and agree that concerning the processing of Customer  Data, Customer is the controller and is a processor acting on behalf of Customer, as further  described in Annex A (Details of Data Processing) of this DPA.  

  2. Purpose limitation: FMDSA shall process Customer Data only following Customer’s documented  lawful instructions as outlined in this DPA, as necessary to comply with applicable law, or as  otherwise agreed in writing (“Permitted Purposes”). The parties agree that the agreement sets  out the Customer’s complete and final instructions to FMDSA concerning the processing of  Customer Data, and processing outside the scope of these instructions (if any) shall require a  prior written agreement between the parties.  

  3. Prohibited data. Customer will not provide (or cause to be provided) any Sensitive Data to  FMDSA for processing under the Agreement, and FMDSA will have no liability whatsoever for  Sensitive Data, whether in connection with a Security Incident or otherwise. For the avoidance  of doubt, this DPA will not apply to Sensitive Data.  

  4. Customer compliance: Customer represents and warrants that (i) it has complied, and will  continue to comply, with all applicable laws, including Data Protection Laws, in respect of its  processing of Customer Data and any processing instructions it issues to FMDSA; and (ii) it has  provided, and will continue to provide, all notice and has obtained, and will continue to obtain,  all consents and rights necessary under Data Protection Laws for FMDSA to process Customer  Data for the purposes described in the agreement. Customer shall have sole responsibility for  the accuracy, quality, and legality of Customer Data and how Customer acquired Customer data.  Without prejudice to the generality of the foregoing, Customer agrees that it shall be  responsible for complying with all laws (including Data Protection Laws) applicable to any emails  or other content created, sent, or managed through the service, including those relating to  obtaining consents (where required) to send emails, the content of the emails and its email  deployment practices.  

  5. The lawfulness of Customer’s instructions: Customer will ensure that United Kingdom  processing of the Customer Data by Customer’s instructions will not cause FMDSA to violate any  applicable law, regulation, or rule, including, without limitation, Data Protection Laws. FMDSA  shall promptly notify Customer in writing unless prohibited from doing so under EU Data  Protection Laws if it becomes aware or believes that any data processing instruction from  Customer violates the GDPR or any UK implementation of the GDPR.  

Your Legal Rights  

Under certain circumstances, you have rights under data protection laws in relation to your personal  data. 

You may have the following rights:

  1. Request access to your personal data (commonly known as a “data subject access request”). This  enables you to receive a copy of the personal data we hold about you and to check that we are  lawfully processing it.  

  2. Request correction of the personal data that we hold about you. This enables you to have any  incomplete or inaccurate data we hold about you corrected, though we may need to verify the  accuracy of the new data you provide to us.  

  3. Request deletion of your personal data. This enables you to ask us to delete or remove personal  data where there is no good reason for us continuing to process it. You also have the right to ask  us to delete or remove your personal data where you have successfully exercised your right to  object to processing (see below), where we may have processed your information unlawfully or  where we are required to erase your personal data to comply with local law. Note, however, that  we may not always be able to comply with your request of erasure for specific legal reasons  which will be notified to you, if applicable, at the time of your request.
      
  4. Object to processing of your personal data where we are relying on a legitimate interest (or  those of a third party) and there is something about your situation which makes you want to  object to processing on this ground as you feel it impacts on your fundamental rights and  freedoms. You also have the right to object where we are processing your personal data for  direct marketing purposes. In some cases, we may demonstrate that we have compelling  legitimate grounds to process your information which override your rights and freedoms.  

  5. Request restriction of processing of your personal data. This enables you to ask us to suspend  the processing of your personal data in the following scenarios:  

    1. If you want us to establish the data’s accuracy.  
    2. Where our use of the data is unlawful, but you do not want us to erase it.  
    3. Where you need us to hold the data even if we no longer require it as you need it to  establish, exercise or defend legal claims.  
    4. You have objected to our use of your data, but we need to verify whether we have  overriding legitimate grounds to use it.  

  6. Request the transfer of your personal data to you or to a third party. We will provide to you, or a  third party you have chosen, your personal data in a structured, commonly used, machine readable format. Note that this right only applies to automated information which you initially  provided consent for us to use or where we used the information to perform a contract with  you. 

  7. Withdraw consent at any time where we are relying on consent to process your personal data.  However, this will not affect the lawfulness of any processing carried out before you withdraw  your consent. If you withdraw your consent, we may not be able to provide certain services to  you.

How do we protect your details?  

  1. We have implemented industry-accepted administrative, physical, and technology-based  security measures to protect against loss, misuse, unauthorized access, and alteration of  personal information in our systems. We ensure that any employee, contractor, corporation,  organization, or vendor who has access to personal information in our systems is subject to legal  and professional obligations to safeguard that personal information.  
  2. We do not use vulnerability scanning and/or scanning to PCI specifications.  
  3. We use regular Malware Scanning.  
  4. Your individual information is comprised behind secured systems and is merely accessible by a  restricted number of folks who’ve special access privileges to such systems and must keep the  information confidential carefully. Furthermore, all very sensitive/credit information you  resource is encrypted via Secure Socket Layer (SSL) technology.  
  5. We implement several security measures whenever a user gets into, submits, or accesses their  information to keep up the protection of your individual information.  
  6. While we strive to use commercially acceptable means to protect your personal information, no  method of transmission over the Internet or form of electronic storage is 100 percent secure.  Therefore, we cannot guarantee its absolute security. 
  7. FMDSA prohibits unauthorized access or use of personal information stored on our servers. Such  access is a violation of law, and we will fully investigate and press charges against any party that  has illegally accessed information within our systems.

Can-spam act  

The CAN-SPAM Act is a regulation that sets the guidelines for commercial email, establishes  requirements for commercial announcements, offers recipients to have emails ceased from being  delivered to them, and spells out hard fines for violations.  

We accumulate your email to be able to:  

  1. Send information, react to questions, and/or other demands or questions  
  2. To maintain compliance with CANSPAM, we consent to the next:  
  3. Not use untrue or misleading subject matter or email addresses.  
  4. Identify the concept as an advertisement in some realistic way.  
  5. Include the physical address of our site headquarters or business  
  6. Screen third-party email marketing services for conformity, if one can be used. 
  7. Honor opt-out/unsubscribe demands quickly.  
  8. Allow users to unsubscribe utilizing the link at the bottom of every email.  

If anytime you want to unsubscribe from receiving future email, you can email us at by using contact  form at our website fmdsa.org and we’ll immediately remove you from ALL communication.

Limitation of liability 

  1. Some jurisdictions do not allow the limitation or exclusion of liability for incidental or  consequential damages so some of the above limitations may not apply to you.  
  2. We make no legal representation that the website or products are appropriate or available for  use in locations outside United States. You may access the website from outside United States.at your own risk and initiative and must bear all responsibility for compliance with any applicable  foreign laws.

Indemnification  

  1. Upon visiting this website you agree release, indemnify, defend and hold harmless FMDSA and  any of its contractors, agents, employees, officers, directors, shareholders, affiliates and assigns  from all liabilities, claims, damages, costs and expenses, including reasonable attorneys’ fees and  expenses, of third parties relating to or arising out of your use of the website content; your use  of the products; your violation of any provision of these terms; any unauthorized information or  data you supplied to us. You will have sole responsibility to defend us against any claim, but you  must receive our prior written consent regarding any related settlement.  

Governing Law and Jurisdiction 

  1. This website originates from United States. The laws of United States. without regard to its  conflict of law principles will govern these terms to the contrary. You, hereby agree that all  disputes arising out of or in connection with these terms shall be submitted to the exclusive  jurisdiction of the United States. By using this website, you consent to the jurisdiction and venue  of such courts in connection with any action, suit, proceeding, or claim arising under or by  reason of these terms. You hereby waive any right to trial by jury arising out of these terms.  

Changes to this privacy notice 

We reserve the right to alter this privacy notice at any time. Such alterations will be posted on our  website. You can also obtain an up-to-date copy of our privacy notice by contacting us.  

Contacting us  

If you would like to contact us to understand more about this Policy or wish to contact us concerning any  matter relating to individual rights and your Personal Information, you may do so via the contact us or  email us at admin@fmdsa.org  

FMDSA  

Address: 26777 Lorain Rd #311   North Olmsted, Ohio 44070, USA  

Phone Number: (216) 834-2410  

Email: admin@fmdsa.org  

This document was last updated on October 22, 2021