Privacy/Permissions Policy
The Foundation for Ichthyosis and Related Skin Types, Inc.® (FIRST) is a non-profit charitable organization devoted to assisting individuals and families with the genetic diseases collectively called the ichthyoses. FIRST provides information and education to both the lay and the professional communities, advocates on behalf of its members in the political and healthcare arenas, and serves as a bridge between the ichthyosis community and the medical profession. The Foundation's website is an important tool in carrying out our mission, and we want you to be comfortable and confident when you use the website and/or contact our office. For that reason, we have adopted this privacy policy.
Our Commitment to Privacy
Your privacy is important to us. To protect your privacy, we provide this notice explaining our information practices and the choices you can make about the way your information is collected and used.
Collection and Use of Personal Information
When you request information online, register using one of our forms, or contact us offline, we may need your specific information in order to process your registration/request and reply to your needs promptly. We may ask you for contact information (such as your name, email and address) and demographic information (such as your zip code or age). We also collect demographic and profile data at our website and in our database. We use this data to tailor your experience at FIRST and to develop and distribute content that we think you might be interested in.
In general, we only use identifiable information to complete the transactions described in this Privacy Policy. In addition, we use any health-related data you provide to us to help us help you through our information, our programs and our services. Part of our mission is to improve the lives of all people affected by the ichthyoses, and we do that by providing appropriate health information to you based upon information you personally provide. We maintain health-related data and do not provide your name and address to outside parties, except as described here.
FIRST Policies Regarding Disclosure of Personal Information
FIRST, unlike many other non-profit organizations, does not make available the names and addresses of our contributors to other companies or organizations, although FIRST does offer programs in which members must consent in advance before a member’s name is disseminated. In addition, FIRST will periodically distribute sample products from carefully selected vendors to its members. All such mailings are prepared by FIRST, and members’ names and addresses are never provided to the manufacturers.
You may choose to share an experience or personal information in response to a social media post, request from the group administrator or as part of a survey. Often the information shared may be helpful or supportive to a wider audience within the FIRST community. In this situation, FIRST will post on the Facebook topic and ask permission to de-identify and summarize the discussion and share on another FIRST platform (ex. E-News, social media, website). When asking permission, FIRST will share a draft of the post or article and where it will appear. Only items granted permission will be used and shared.
It is important that pictures used in our social media, newsletters, printed materials and website reflect the community we serve including various skin types and skin tones. FIRST will seek permission from the parents of minor children and affected adults either through the registration process (opt-in to photos) at FIRST events or before using any other pictures (option to opt-out). Permission will include when and where the pictures may appear. You may update or change your permissions at the link provided below.
Member names are provided to a credit card vendor in order to process credit card transactions. These practices help us reduce the costs of providing more individuals with ichthyosis-related information. The companies with which your name may be shared are carefully screened. Names/addresses are provided on a one-time basis; therefore, these companies will not have continued access to your name and address unless you respond to them directly, which you are free to do or not to do.
You can request that we do not share your information by emailing us at info@firstskinfoundation.org. (If you use more than one email address, postal address or telephone number, please identify each one.)
Our Commitment to Children's Privacy
Protecting the privacy of the very young is especially important. For that reason, we adhere to the 1998 Children's Online Privacy Protection Act (COPPA). (For more information, visit the Federal Trade Commission's COPPA site at http://www.ftc.gov/ogc/coppa1.htm).
Links to Other Sites
On this website, the Foundation for Ichthyosis and Related Skin Types, Inc.®(FIRST) has provided links to websites maintained by third parties, over which FIRST has no control. FIRST will not pass your information along to the linked site; however, FIRST cannot protect the information you provide to that site. The links provided on this website are for convenience and are for informational purposes only. If you choose to click on any links on this website, you agree that FIRST is not responsible or liable for the content, quality, or accuracy of the data provided on these sites, and agree that the link does not constitute an endorsement by FIRST In addition, when you link to a website operated by a different organization, the FIRST Privacy Policy will not apply and you are subject to the privacy policy of that new site. Please be aware that not all websites have privacy notices and policies.
E-mail Guidelines
FIRST does not send unsolicited commercial e-mail to individuals with whom it does not have consent/permission or a pre-existing or current business relationship. FIRST also provides all e-mail recipients with a clear, easy and effective method to unsubscribe to any and all online communications. We do not offer any online mass communications, only individual direct e-mails.
Online payment/security
FIRST uses DonorPerfect Software and DonorPerfect's online payments and integrated processing features have been designed to NOT store, transmit or process credit card data. The actual transmission, storage and processing of credit cards is done by our gateway, which is a Level 1 PCI certified service provider. PCI defines "payment applications" as systems that store, transmit or process credit card data.
How to Correct or Update Information
To change or modify information previously provided:
E-mail lbreuning@firstskinfoundation.org or send a letter to:
Attention: Privacy Policy
Foundation for Ichthyosis and Related Skin Types, Inc.®
PO Box 1067
Lansdale, Pennsylvania 19446-0687
Tell us what you think
FIRST welcomes your questions and comments about this privacy statement, about the practices of FIRST, and about your dealings with our website. Please send e-mail to lbreuning@firstskinfoundation.org, or write to:
Attention: Online Services
Foundation for Ichthyosis and Related Skin Types, Inc.®
PO Box 1067
Lansdale, Pennsylvania 19446
Permission to use material from this website / reprints / copyright
The Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) retains copyright on the content of this site, unless otherwise noted.
Reprint or reuse of information from this site without change
To request permission to use information from this website for other than personal use, send an email describing intended use, duration and contact information to lbreuning@firstskinfoundation.org
Translations and adaptations
Translations or adaptations of Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) content must be reviewed and approved by the Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST). Please send an email describing intended use, duration and contact information to lbreuning@firstskinfoundation.org
Using content from Foundation press releases
Reprint of Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) content or references to Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) contact information in an organization’s press release must be approved by the public relations director of the Foundation. Please send queries to lbreuning@firstskinfoundation.org
Logos
Using any of the Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) registered trademarks(logos) without the Foundation’s prior consent is strictly prohibited. Please send written requests describing intended use, duration, and contact information to lbreuning@firstskinfoundation.org.
Photographs and graphics
The photographs and graphics on our website are not available for reproduction by third parties.
Linking policy
When linking to the Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) website, web managers should be aware that the Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) trademarks are not available for posting or replication on third party websites without a written agreement with the Foundation. As part of the permission agreement for web linking, third parties must post the following with any trademark, URL, or content used from the Foundation website:
Linking Disclaimer: The Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) is not responsible for information or advice provided by others, including information on websites that link to Association sites and on third party sites to which the Foundation links. Please direct any questions to lbreuning@firstskinfoundation.org.
Disclaimer
The Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) works to ensure that the information provided on its authorized website is accurate, timely and useful. However, the information contained on Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) website should not be considered medical guidance or professional advice. The Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST), its affiliates or agents, or any other parties involved in the preparation or publication of this site are not responsible for errors or omissions in information provided on this site or any actions resulting from the use of such information. Visitors are encouraged to confirm the information contained herein with other reliable sources and to direct any questions concerning their personal health to licensed physicians or other appropriate health care professionals. Corrections and additions to this site will be made when necessary or as time permits.
Required Fundraising Disclosure Statements
A copy of the latest financial report, registration filed by this organization and a description of our programs and activities may be obtained by contacting us at: Foundation for Ichthyosis & Related Skin Types, Inc. (FIRST), PO Box 1067, Lansdale, PA 19446. If you are a resident of one of the following states, you may obtain financial information directly from the state agency.
- FLORIDA - A COPY OF THE OFFICIAL REGISTRATION AND FINANCIAL INFORMATION MAY BE OBTAINED FROM THE DIVISION OF CONSUMER SERVICES BY CALLING TOLL-FREE, WITHIN THE STATES, 800-435-7352 (800-HELP-FLA) OR BY VISITING www.800helpfla.com. REGISTRATION DOES NOT IMPLY ENDORSEMENT, APPROVAL OR RECOMMENDATION BY THE STATE. Florida Registration #CH18628
- GEORGIA – A full and fair description of our programs and our financial statement summary is available upon request at our office and phone number indicated above.
- COLORADO– Colorado residents may obtain copies of registration and financial documents from the office of the Secretary of State, 303-894-2860, www.sos.state.co.us/ Reg. No. 20053003387
- MARYLAND– For the cost of copies and postage, from the Office of the Secretary of State, State House, Annapolis, MD 21401.
- MICHIGAN – MICS #28598
- MISSISSIPPI – The official registration and financial information of Foundation for Ichthyosis & Related Skin Types, Inc. (FIRST) may be obtained from the Mississippi Secretary of State’s office by calling 888-236-6167. Registration by the Secretary of State does not imply endorsement.
- NEW JERSEY – INFORMATION FILED WITH THE ATTORNEY GENERAL CONCERNING THIS CHARITABLE SOLICITATION AND THE PERCENTAGE OF CONTRIBUTIONS RECEIVED BY THE CHARITY DURING THE LAST REPORTING PERIOD THAT WERE DEDICATED TO THE CHARITABLE PURPOSE MAY BE OBTAINED FOR THE ATTORNEY GENERAL OF THE STATE OF NEW JERSEY BY CALLING 973-504-6215 AND IS AVAILABLE ON THE INTERNET AT: http://www.state.nj.us/lps/ca/charfrm.htm. REGISTRATION WITH THE ATTORNEY GENERAL DOES NOT IMPLY ENDORSEMENT.
- NEW YORK – Upon Request, Attorney General Charities Bureau, 102 Broadway, New York, NY 10271
- NORTH CAROLINA– Financial information about this organization and a copy of its license are available for the State Solicitation Licensing Branch at 919-807-2214. This is not an endorsement by the state.
- PENNSYLVANIA – The official registration and financial information of Foundation for Ichthyosis & Related Skin Types, Inc. (FIRST) may be obtained from the Pennsylvania Department of State by calling toll-free within Pennsylvania 800-732-0999. Registration does not imply endorsement.
- VIRGINIA – State Division of Consumer Affairs, Department of Agriculture and Consumer Services, PO Box 1163, Richmond, VA 23218.
- WASHINGTON – This organization is currently registered with the secretary's office under the charitable solicitation act - call 1-800-332-4483
- WEST VIRGINIA – West Virginia residents may obtain a summary of the registration and financial documents form the Secretary of State, State Capitol, Charleston, WV 25305
