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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

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 If we become aware that a child under 13 has provided us with Personal Information, we will delete such information from our files.


For media inquiries, please contact:

Felicia DeRosa
533 W Uwchlan Ave
Downingtown, PA 19335
(484) 879 6160



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Friedreich's Ataxia Research Alliance


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

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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.


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 can be accessed below.

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:

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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