HFNC and Your Personal Information

Hemophilia Foundation of Northern California (HFNC) collects personal information from its community members in order to communicate about Foundation events, activities and services. Our primary purpose for collecting this information is to contact you regarding programs such as Camp Hemotion, Family Education Day, The Female Factor and others. We take our responsibility to protect your personal information seriously and work constantly to improve our systems and processes including communicating our information protection policies to all relevant parties.

Question: What information does HFNC collect?
Answer: We primarily collect contact information such as name, address, phone number, email and the like. Additionally, we collect information regarding bleeding disorder types and your community connection (E.g. Parent, carrier, sibling, etc.). This helps us focus our communications to you. It provides HFNC with an accurate census of the community. It also helps make sure that we don’t bombard your eight-year old with requests for donations or invite your grandpa to our youth camp. This general contact information resides in our database powered by Bloomerang. Bloomerang is a popular community management software tool used by many other bleeding disorder chapters.

Question: Does the Foundation collect medical records or data?
Answer: The Foundation does not collect or maintain individual medical records of any kind for use in day-to-day Foundation business. However, HFNC utilizes a secure database with a software called DocNetwork (aka Camp Docs), a well known software used by schools and camps around the country. We use Camp Docs to collect medical information required by infirmary staff to keep your children safe at Camp Hemotion. This data resides separate from our day-to-day database with Bloomerang. The medical information is only accessible by infirmary or foundation staff. Some of us remember when paper applications with medical data were kept at the Foundation. This is no longer the case!

Question: Who has access to my personal information?
Answer: HFNC does not sell your personal information to any organization and uses information for the purpose of contacting you about events and activities. HFNC also receives advertising revenue from industry partners who may want to send marketing materials to community members on our mailing list. In such cases, HFNC staff and/or volunteers prepare the mailing. Your information is never provided to any company or organization. The Foundation can only be successful with the help of our many volunteers. We recognize that some of our volunteers also work in industry. For that reason, all volunteers are required to sign a Code of Conduct. This clearly spells out that any contact information can ONLY be used in the course of conducting specific Foundation business. It cannot be collected or kept by any volunteer, or used in any way, or at any other time or location. HFNC has a zero tolerance policy for violations of our policy and will investigate reported violations. For example, volunteers from one of our programs such as Camp Hemotion or Family Camp may help us get the word out regarding upcoming activities. HFNC also utilizes volunteers for specific community outreach programs.