Financial Statements, Tax Returns, Annual Reports, Privacy and Other Policies.
FINANCIAL REPORTS, 990 TAX AND ANNUAL REPORTS
2021 Audited Financial Statements 2021 Tax Return 990 2021 Annual Report
2020 Audited Financial Statements 2020 Tax Return 990 2020 Annual Report
2019 Audited Financial Statements 2019 Tax Return 990 2019 Annual Report
2018 Audited Financial Statements 2018 Tax Return 990 2018 Annual Report
2017 Audited Financial Statements 2017 Tax Return 990 2017 Annual Report
2016 Audited Financial Statements 2016 Tax Return 990 2016 Annual Report
2015 Audited Financial Statements 2015 Tax Return 990 2015 Annual Report
2014 Audited Financial Statements 2014 Tax Return 990 2014 Annual Report 2014 Supplemental
2013 Audited Financial Statements 2013 Tax Return 990 2013 Annual Report
2012 Audited Financial Statements 2012 Tax Return 990 2012 Annual Report
Policies, Usage and Copyright
Privacy Policy
Pachyonychia Congenita Project (PC Project) is committed to protecting and respecting the privacy of our donors and visitors to the website. The following information discloses our information gathering and dissemination practices for www.pachyonychia.org website.
Cookies and Usage Data
Each internet browser has a feature called “cookies” which store small amounts of data on your computer about your visit to pachyonychia.org. We use cookies to tell us how and when pages on our site are visited, what users’ technology preferences are (such as what video player they use) and whether our site is functioning properly.
Each time a visitor comes to pachyonychia.org, we automatically gather certain usage information such as frequency of visitors to the site. This information may include what browser you are using and your internet protocol (IP) address. We use Google Analytics software to keep track of traffic to our site and which particular pages within pachyonychia.org are being viewed and for how long. We may know we had 100 individual visitors to our website today, but we do not know their name, address or other personal information.
Third Parties
Your name or other information will not be shared with third parties unless you have specifically requested to do so or granted us permission to do so.
Links and Social Media Sites
PC Project website contains links to other websites. PC Project is not responsible for the privacy practices or the content of such websites. These links are provided solely as a convenience to you and do not constitute an endorsement or affiliation by PC Project.
Although our social media channels and facebook groups are monitored by staff, we have no control over information you or others may submit, post or share on social media or other websites – even where we link to them from our own website or they link to our website. When you use these sites you do so in accordance with the separate terms and conditions and policies of these sites.
Security
We care about the security of your transactions and use standard industry practices to safeguard your information. This site has security measures in place to protect the loss, misuse and alteration of the information under our control. Our computer network and those of our hosting company are protected by passwords, firewalls and other security in accordance with HIPPA requirements. All data is stored in a password encrypted secure database accessed only by PC Project staff.
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 your 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 databases. We use this data to tailor your experience at PC Project and to develop and distribute content that we think you might be interested in. PC Project’s policy is that it does not disclose, give, sell, or transfer any personal information to others unless required for law enforcement or otherwise required by law. The contact information collected is used solely to provide free informational materials regarding Pachyonychia congenita or to provide a tax-related donation receipt to donors.
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 pachyonychia congenita, and we do that by providing appropriate health information to you based upon information you personally provide. We maintain health-related data under HIPAA standards and do not provide your name and address to outside parties, unless you have specifically granted us permission to do so.
Forms and donations
Our site uses forms for visitors to request information and services. We collect contact information (like name, address and email). The contact information is used to deliver services and send information about our organization or answer inquires. Users may opt-out of receiving future mailings by sending an email to info@pachyonychia.org.
When you make a donation by credit card, you are going through to a partner company of your choice (such as PayPal, GiveDirect, JustGiving) and providing them the information for your donation such as credit card number and contact information so the transaction can take place. Below are three companies we use for these services. You can click on them to find out how they use and store your data.
PayPal
Give Direct
JustGiving
Contacting PC Project
If you have any questions about this privacy statement, the practices of this site, or your dealings with this website, you may contact us at:
Email: info@pachyonychia.org
Mail: PC Project, PO Box 17850, Holladay, UT 84117
Telephone: 801-987-8758
This Privacy Policy Statement details PC Project Privacy Policy has been in place since PC Project website went online. We regularly review and update this policy to make sure it is accurate and simple to understand. The policy was last updated in 9 July 2020.
Advertising
No paid advertising, banners or links are permitted on this website and no paid advertising, banners or links on this website are used in any way for fundraising.
Permission to use material from this website / reprints / copyright
PC Project retains copyright on the content of this site, unless otherwise noted. 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 info@pachyonychia.org.
Image Acknowledgements

Photo by Emma Freedman
Emma is a social documentary photographer and visual storyteller. We are grateful for her permission to use this photo of her friend, who suffers with Pachyonychia Congenita, on our website.