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2024

Minutes of September 11, 2024
Minutes of July 31, 2024
Minutes of June 26, 2024
Minutes of April 30, 2024
Minutes of March 30, 2024
Minutes of March 7, 2024

2023

Minutes of December 20, 2023
Minutes of November 2, 2023
Minutes of June 27, 2023
Minutes of April 27, 2023
Minutes of March 11, 2023
Minutes of February 17, 2023

2022

Minutes of December 13, 2022
Minutes of November 17, 2022
Minutes of October 17, 2022
Minutes of September 12, 2022
Minutes of June 23, 2022
Minutes of April 25, 2022
Minutes of March 5, 2022
Minutes of February 22, 2022
Minutes of February 7, 2022

2021

Minutes of December 14, 2021
Minutes of October 29, 2021
Minutes of October 20, 2021
Minutes of August 18, 2021
Minutes of June 16, 2021
Minutes of April 15, 2021
Minutes of March 13, 2021
Minutes of February 26, 2021
Minutes of February 23, 2021

2020

Minutes of December 12, 2020
Minutes of December 8, 2020
Minutes of October 3-4, 2020
Minutes Of August 21, 2020
Minutes of June 23, 2020
Minutes of April 14, 2020
Minutes of February 29 2020
Minutes of January 29, 2020

2019

Minutes of December 2, 2019
Minutes of October 19, 2019
Minutes of August 23, 2019
Minutes of July 10, 2019
Minutes of April 24, 2019
Minutes of February 16, 2019
Minutes of January 9, 2019

2018

Minutes of December 11, 2018
Minutes of October 23, 2018
Minutes of August 28, 2018
Minutes of July 17, 2018
Minutes of April 9, 2018
Minutes of February 13, 2018
Minutes of January 26, 2018

2017

Minutes of October 18, 2017
Minutes of June 28, 2017
Minutes of April 8-9, 2017
Minutes of February 15, 2017
Minutes of January 25, 2017

2016

Minutes of November 1, 2016
Minutes of September 27, 2016
Minutes of July 20, 2016
Minutes of June 23, 2016
Minutes of April 14, 2016
Minutes of February 20, 2016
Minutes of January 19, 2016

2015

Minutes of November 15, 2015
Minutes of September 10, 2015
Minutes of May 26, 2015
Minutes of February 28-March 1, 2015

2014

Minutes of December 16, 2014
Minutes of September 16, 2014
Minutes of June 23, 2014
Minutes of April 10, 2014
Minutes of February 11, 2014
Minutes of January 14, 2014

2013

Minutes of April 23, 2013
Minutes of February 9, 2013
Minutes of January 25, 2013

2012

Minutes of December 6, 2012
Minutes of September 11, 2012
Minutes of June 24, 2012
Minutes of April 29, 2012
Minutes of April 18, 2012
Minutes of February 25, 2012
Minutes of February 4, 2012
Minutes of January 24, 2012

2011

Minutes of September 16-18, 2011
Minutes of April 9-10, 2011
Minutes of February 19, 2011
Minutes of January 27, 2011

2010

Minutes of November 13-14, 2010
Minutes of July 25, 2010
Minutes of May 15, 2010
Minutes of February 21, 2010
Minutes of January 21, 2010

2009

Minutes of November 14, 2009
Minutes of October 28, 2009
Minutes of October 22, 2009
Minutes of July 11, 2009
Minutes of April 4-5, 2009
Minutes of February 7, 2009
Minutes of January 24, 2009

2008

Minutes of November 15, 2008
Minutes of September 27, 2008
Minutes of July 8, 2008
Minutes of March 30, 2008
Minutes of February 16, 2008
Minutes of January 24, 2008

Last updated 12-Sept-2022

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Barth Syndrome Foundation

Charity #: 22-3755704

2005 Palmer Avenue #1033

Larchmont, New York 10538

Phone (914) 303-6323

Fax (914) 303-6323

Text (914) 303-6323

Contact

Privacy Policy

Privacy Policy

What Information Do We Collect? When you visit our website you may provide us with two types of information: personal information you knowingly choose to disclose that is collected on an individual basis and website use information collected on an aggregate basis as you and others browse our website.
Personal Information You Choose to Provide We may request that you voluntarily supply us with personal information, including your email address, postal address, home or work telephone number and other personal information for such purposes as correspondence, placing an order, requesting an estimate, or participating in online surveys. If you choose to correspond with us through email, we may retain the content of your email messages together with your email address and our responses. We provide the same protections for these electronic communications that we employ in the maintenance of information received by mail and telephone.
Website Use Information Similar to other websites, our site may utilize a standard technology called "cookies" (see explanation below, "What Are Cookies?") and web server logs to collect information about how our website is used. Information gathered through cookies and server logs may include the date and time of visits, the pages viewed, time spent at our website, and the sites visited just before and just after ours. This information is collected on an aggregate basis. None of this information is associated with you as an individual.
How Do We Use the Information That You Provide to Us? Broadly speaking, we use personal information for purposes of administering our business activities, providing service and support and making available other products and services to our customers and prospective customers. Occasionally, we may also use the information we collect to notify you about important changes to our website, new services and special offers we think you will find valuable. The lists used to send you product and service offers are developed and managed under our traditional standards designed to safeguard the security and privacy of all personal information provided by our users. You may at any time to notify us of your desire not to receive these offers.
What Are Cookies? Cookies are a feature of web browser software that allows web servers to recognize the computer used to access a website. Cookies are small pieces of data that are stored by a user's web browser on the user's hard drive. Cookies can remember what information a user accesses on one web page to simplify subsequent interactions with that website by the same user or to use the information to streamline the user's transactions on related web pages. This makes it easier for a user to move from web page to web page and to complete commercial transactions over the Internet. Cookies should make your online experience easier and more personalized.
How Do We Use Information Collected From Cookies? We use website browser software tools such as cookies and web server logs to gather information about our website users' browsing activities, in order to constantly improve our website and better serve our users. This information assists us to design and arrange our web pages in the most user-friendly manner and to continually improve our website to better meet the needs of our users and prospective users. Cookies help us collect important business and technical statistics. The information in the cookies lets us trace the paths followed by users to our website as they move from one page to another. Web server logs allow us to count how many people visit our website and evaluate our website's visitor capacity. We do not use these technologies to capture your individual email address or any personally identifying information about you.
Notice of New Services and Changes Occasionally, we may use the information we collect to notify you about important changes to our website, new services and special offers we think you will find valuable. As a user of our website, you will be given the opportunity to notify us of your desire not to receive these offers by clicking on a response box when you receive such an offer or by sending us an email request.
How Do We Secure Information Transmissions? When you send confidential personal information to us on our website, a secure server software which we have licensed encrypts all information you input before it is sent to us. The information is scrambled en route and decoded once it reaches our website. Other email that you may send to us may not be secure unless we advise you that security measures will be in place prior to your transmitting the information. For that reason, we ask that you do not send confidential information such as Social Security, credit card, or account numbers to us through an unsecured email.
How Do We Protect Your Information? Information Security -- We utilize encryption/security software to safeguard the confidentiality of personal information we collect from unauthorized access or disclosure and accidental loss, alteration or destruction. Evaluation of Information Protection Practices -- Periodically, our operations and business practices are reviewed for compliance with organization policies and procedures governing the security, confidentiality and quality of our information.
Employee Access, Training and Expectations -- Our organization values, ethical standards, policies and practices are committed to the protection of user information. In general, our business practices limit employee access to confidential information, and limit the use and disclosure of such information to authorized persons, processes and transactions.
How Can You Access and Correct Your Information? You may request access to all your personally identifiable information that we collect online and maintain in our database, or you may request that we correct your personal information, by emailing us using the contact form provided to you within the site structure of our website, by sending a letter to: 2005 Palmer Avenue #1033, Larchmont, NY 10538, Attn: Lynda Sedefian, or by calling 914-303-6323.
Do We Disclose Information to Outside Parties? We may provide aggregate information about our customers, sales, website traffic patterns and related website information to our affiliates or reputable third parties, but this information will not include personally identifying data, except as otherwise provided in this privacy policy.
What About Legally Compelled Disclosure of Information? We may disclose information when legally compelled to do so, in other words, when we, in good faith, believe that the law requires it or for the protection of our legal rights.
Permission to Use of Materials The right to download and store or output the materials in our website is granted for the user's personal use only, and materials may not be reproduced in any edited form. Any other reproduction, transmission, performance, display or editing of these materials by any means mechanical or electronic without our express written permission is strictly prohibited. Users wishing to obtain permission to reprint or reproduce any materials appearing on this site may contact us directly.

Terms & Conditions

Terms & Conditions

Donation Refund Policy

We are grateful for your donation and support of our organization. If you have made an error in making your donation or change your mind about contributing to our organization please contact us. Refunds are returned using the original method of payment. If you made your donation by credit card, your refund will be credited to that same credit card.

Automated Recurring Donation Cancellation

Ongoing support is important to enabling projects to continue their work, so we encourage donors to continue to contribute to projects over time. But if you must cancel your recurring donation, please notify us.

© Barth Syndrome Foundation 2024

About BSF
Research
Barth Syndrome
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News & Events
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Barth Syndrome Foundation does not endorse any drugs, tests, or treatments that we may report.

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