It is the policy of the PBCers Organization that its board directors, committee members, moderators, and volunteers uphold the highest standards of ethical and professional behavior, and they shall dedicate themselves to carrying out the mission of this organization. We shall act in such a manner as to uphold and enhance personal and professional honor and integrity. We shall treat all persons with respect and consideration, regardless of race, religion, gender, sexual orientation, marital or family status, disability, age, or national origin.

In addition, we will:

• Collaborate with and support other PBC groups and medical professionals in carrying out the PBCers Organization’s mission. 
• Build a professional reputation on the merit of our services and refrain from competing unfairly with others. 
• Recognize that at all times, the chief function of the PBCers Organization is to serve the best interests of its membership.

PBCers Organization volunteers are recruited through the PBC Daily Digest, Facebook private groups, and referrals by other volunteers. In addition, individuals may offer their assistance as volunteers. For events, we recruit local volunteers if possible to avoid the high cost of travel expenses. Many of our volunteers are long-term organization members who not only assist with projects and events, but also help train new volunteers.

Volunteers are trained by one of the Executive Committee members or a project chair. This is done prior to the project/event or in person at an event. Most of our events are the type that require greeting participants and handing out materials, so required volunteer training is minimal.

Volunteers are representatives of the PBCers Organization and are responsible for presenting a positive image to the community. Volunteers will be informed of the dress standard for their duties before or at the time of their assignment.

Volunteer attendance is important to the operation of each program. Volunteers should notify their committee chairperson in advance if they are unable to be present for their scheduled day or presentation. Volunteers are responsible for submitting a brief summary of their participation at the conclusion of the project.

No volunteer shall use PBCers Organization stationery or any PBCers Organization title unless serving on a specific committee. Volunteers will wear a PBCers Organization name tag at events.

The PBCers Organization maintains accounting records. As a nonprofit charity, our accounting records are open to the public.

Board Directors, Executive Committee members, moderators and other volunteers of the PBCers Organization may not disclose, divulge, or make accessible any confidential information belonging to, or obtained through their affiliation with the PBCers Organization to any person, including relatives, friends, and business and professional associates, other than to persons who have a legitimate need for such information and to whom the PBCers Organization has authorized disclosure.

Volunteers shall use confidential information solely for the purpose of performing services as a volunteer for the PBCers Organization. This policy is not intended to prevent disclosure where disclosure is required by law. Volunteers are responsible for submitting and updating their information contained in the PBCers Organization’s files, such as e-mail address, phone number and mailing address.

The PBCers Organization recognizes that volunteers may be required to travel or incur expenses from time to time to conduct business and further the mission of our organization. The purpose of this policy is to ensure that (a) adequate cost controls are in place, (b) travel and other expenditures are appropriate, and (c) to provide a uniform and consistent approach for the timely reimbursement of authorized expenses incurred. It is the policy of the PBCers Organization to reimburse only reasonable and necessary expenses actually incurred.

Prior to being incurred, all expenses must be approved by the Executive Committee or the Conference Committee Chairperson, whichever applies. Volunteers must submit the request in the form of e-mail to the PBCers Organization at pbcers@pbcers.org, explaining the expense/s and requesting approval.

Reimbursement for travel to and from volunteer service by personal motor vehicle is based on mileage at the standard rate per mile according to the IRS allowable mileage rate. Parking and tolls may also be reimbursable.

Reimbursement for travel to and from volunteer service by public transportation (air, bus, train, boat, taxi, shuttle, ferry, etc.) is based on actual out-of-pocket expense, which must be substantiated by receipts. In some cases, meals and miscellaneous expenses may be reimbursed for out-of-town travel and/or all-day events.

PBCers Organization expense reports need to be submitted within two weeks of incurring the expense. Expense reports can be submitted through e-mail to PBCers@pbcers.org or by U.S. Postal mail to PBCers Organization, 1014-A Greenleaf Road, Rochester, NY 14612.

Receipts are required for all expenditures, no matter what the amount. There will be no reimbursement without original receipt(s} and an expense report.

Volunteers are responsible for PBCers Organization’s property, including materials, files, keys, passwords and any other written or electronic information issued to or in volunteers’ possession or control. All PBCers Organization property must be returned on or before the last day of a project.

PBCers Organization is committed to providing volunteers with an environment that is free from discrimination and unlawful harassment. Actions, words, jokes, or comments based on an individual’s sex, race, ethnicity, age, religion, or any other legally protected characteristic will not be tolerated. PBCers Organization encourages volunteers to bring any incidents of sexual harassment to the immediate attention to their Project or Committee Chairperson.

The PBCers Organization will not retaliate in any way against an individual who makes a report of discrimination or sexual harassment. An investigation of the alleged discrimination or harassment will be handled through the Executive Committee in a confidential manner so as to protect the privacy of the persons involved. Upon completion of the discrimination and harassment investigation, the Executive Committee will recommend the appropriate action to be taken. If the complaint cannot be substantiated, this finding will be communicated to the complainant in an appropriately sensitive manner. If the complaint is against an Executive Committee member, the investigation will be handled by the Board of Directors.

In accordance with the Sarbanes-Oxley Act, the purpose of the conflict of interest policy is to protect the interests of the tax-exempt Primary Biliary Cholangitis Organization (PBCers Organization) when it is contemplating entering into a transaction or arrangement that might benefit the private interest of a Board director, committee member, moderator or other volunteer of the PBCers Organization, or that might result in a possible excess benefit transaction. This policy is intended to supplement, but not replace, any applicable state and federal laws governing conflict of interest applicable to nonprofit and charitable organizations.
Accepting Payment or Gifts: No volunteer acting on behalf of the PBCers Organization shall accept payment of any kind (including gifts, cash, discounts, concessions, services or other similar items or benefits) for services rendered as part of his or her volunteer service. This includes payment for speaking engagements or for participation in workshops or similar activities.

Improper Influence: No volunteer, or a volunteer’s close relative, should, when acting on his or her own behalf or when acting on behalf of another person, business or organization, attempt to influence the PBCers Organization’s position on any issue, matter or transaction, nor participate in any discussions pertaining to a related organization.

Competing with PBCers Organization: No volunteer shall prevent or hinder the PBCers Organization from lawfully competing with others or divert business from the PBCers Organization.

Conflict of Interest Decision: The PBCers Organization’s Board of Directors will determine whether a Conflict of Interest is occurring or has occurred.

Volunteers are encouraged to take an active interest and to participate in the political and governmental process. However, except for registered lobbyists and others authorized to act on behalf of the PBCers Organization, volunteers engaging in political activities do so as individuals and not as representatives of the PBCers Organization. To avoid any inference of support or sponsorship by the PBCers Organization, a volunteer must never represent that his or her political donation, endorsement or other political activity was made or engaged in with the approval, or on behalf, of the PBCers Organization. Likewise, volunteers must not engage in political activities during their volunteer service on behalf of the PBCers Organization.

In accordance with the Sarbanes-Oxley Act, if any Board director, committee member, or other volunteer reasonably believes that some policy, practice, or activity of the PBCers Organization is in violation of law, a written complaint must be filed by that person with the Executive Committee and/or the Board President.

It is the intent of the PBCers Organization to adhere to all laws and regulations that apply to the organization, and the underlying purpose of this policy is to support the organization’s goal of legal compliance. The support of all the volunteers is necessary to achieve compliance with various laws and regulations..

The purpose of local groups is to meet face-to-face with other people with PBC, share information about goals and personal experiences, raise funds for research, promote PBC awareness, and build friendships with others who share the same disease.

Local meetings are not hosted by the PBCers Organization. These meetings are hosted by area PBC patients, family members, friends, area physicians, medical clinics, and hospitals. The PBCers Organization cannot be held liable in any way for local PBC meetings. This includes, but is not limited to, publication of local group’s contact information, meeting expenses, activities and location, local event fundraisers, and/or any other events associated with local groups.