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Privacy Policy

Privacy Policy

Friedreich's Ataxia Research Alliance is committed to respecting and protecting your privacy. This Privacy Policy explains what we do with the personal information that we collect from you. If you have any questions or concerns regarding this policy, please contact us at info@curefa.org.

What Information Do We Gather About You?

Friedreich's Ataxia Research Alliance collects information about our readers so that we can provide a more interesting and useful service. We ask for your name, email address, and other personal information when you register to use certain features of our Web site, when you become a member. We also may ask for this information at other times, such as when you enter contests or other promotions sponsored by Friedreich's Ataxia Research Alliance and/or our partners. We sometimes conduct surveys as well, although you do not have to respond to them.

We collect IP addresses for site security and to help us understand how people use our sites so that we can improve our sites and our users' experiences. For similar quality reasons, we use a feature known as a "cookie." Cookies contain bits of information that websites transfer to your computer's hard drive for record-keeping purposes. Cookies can make the Web more convenient by storing information about your preferences on a site. Although we may assign your browser a cookie, the cookie does not tell us who you are. Only you can tell us that. We discuss cookies later in this Privacy Policy.

When you place an order for a product or service, we need to know the sort of information typically used for credit card transactions, such as your name, address, telephone number, and credit card number and expiration date. We will use your information to contact you regarding your order if necessary. We encrypt all of this information using Secure Socket Layers (SSL) technology.

Besides cookies, we may also use tiny electronic images (called "single-pixel GIFs" or "Web beacons") in the following ways:
To count and recognize users.
To conduct research on behalf of some partners on their websites, and for auditing purposes.
To determine aggregate information about users, including demographic and usage information.
To determine which email messages were opened and/or acted upon when we send HTML-formatted email messages (messages resembling Web pages that include graphics).

Our sites are not directed at children under the age of 13. We operate our sites in compliance with the Children's Online Privacy Protection Act and will not knowingly collect or use personally identifiable information from anyone under 13. If a parent or guardian becomes aware that his or her child has provided us with Personal Information without their consent, he or she should contact us at info@curefa.org. If we become aware that a child under 13 has provided us with Personal Information, we will delete such information from our files.

Media

For media inquiries, please contact:

Felicia DeRosa
FARA
533 W Uwchlan Ave
Downingtown, PA 19335
(484) 879 6160
info@cureFA.org

 

 
 

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Contact

Friedreich's Ataxia Research Alliance


Contact

Main Office:   533 W Uwchlan Ave
Downingtown, PA 19335 USA
Phone: (484) 879-6160
Fax: (484) 872-1402
 
Virginia Office:   PO Box 1537
Springfield, VA 22151 USA
 
Email:   info@curefa.org
 

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Your connection to the Friedreich's Ataxia Research Alliance

To receive future FARA Monthly Updates, please click below to subscribe.
You will receive FARA's Monthly Update emails. The Monthly Update is a digest of FARA news including enrolling clinical trials, research grants funded, advocacy initatives, and upcoming events.

Financials

FARA feels a strong responsibility to be good stewards of the funds entrusted to us. Charity Navigator, America's largest and most influential charity rater on financial health, accountability and transparency and results reporting, has rated FARA with their highest rating of 4 stars for 11 years. Less than 2% of charities evaluated have maintained at least 11 consecutive 4 star ratings.

FARA's most recent financial documents and donor policies can be accessed below.


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Can't see this document? Click Here

 

+ Donor Bill of Rights
+ Donor Privacy Policy
+ Corporate Relations Policy
+ State Nonprofit Disclosures

Third Party Data Breach  
(posted July 29, 2020)

Recently, FARA learned of a data breach at Blackbaud Inc., a third-party data service provider we use for our fundraising efforts. FARA was one of many nonprofits and schools that was impacted by this incident.

Blackbaud informed us that they discovered and stopped a ransomware attack and, with the help of independent forensics experts and law enforcement, successfully prevented the cybercriminal from locking them out of the system and taking full control of their files. However, the attackers were able to remove a backup file that contained some personally identifying information about Blackbaud's nonprofit clients' donors and prospective donors, including those of FARA. Please note that no credit card or bank account information was compromised in this breach. Click HERE to read a full description of the incident on Blackbaud’s website.

Blackbaud believes they have successfully retrieved the stolen data. Furthermore, Blackbaud has firmly expressed to us that based on the nature of the incident, the research performed by them, and information provided by third-party investigators and law enforcement, that they do not believe that any data was or will be misused; or will be disseminated or otherwise made available publicly.

Ensuring the safety of our donors’ data is of the utmost importance to FARA and we make every effort to safeguard your information. FARA’s contractual agreements have always required Blackbaud to keep our constituent information confidential and to have security procedures in place to minimize breaches. As part of their ongoing efforts to help prevent something like this from happening in the future, Blackbaud has implemented changes to further protect your data. Such measures include identifying and rectifying the vulnerability associated with this incident, and confirmation testing by multiple third parties, including the appropriate platform vendors, that the fix withstands all known attack tactics.

Although Blackbaud asserts that there is a very low risk from this breach, should you encounter any suspicious activity that you believe may be related, we recommend you promptly report it to us and to the proper law enforcement authorities. If you have any related questions or concerns, please contact us at (484) 879 6160 or info@curefa.org.



FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for treatments and a cure.

The Ambassadors are a service team within the FARA organization. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. Together we seek to know more about the research and pharmaceutical pipelines being developed through FARA in order to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure.

FARA Ambassador Program Mission Statement:

The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

This is where I would expect a link to the Ambassadors Biographies. This could be set-up as a category blog layout in this spot also. Since each biography is actually a categorized article, this would be the preferred solution from my end.

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