Introduction
1. Founded in July 2012, and based in Belle Mead, New Jersey, USA, the Post-Finasteride Syndrome Foundation (PFSF) is a 501(c)(3) not-for-profit organization that abides by the US Internal Revenue Service’s Substantiation and Disclosure Requirements for Charitable Contributions. As set out in our mission statement, we are dedicated to facilitating clinical and epidemiological research into post-finasteride syndrome (PFS), a condition with no known cure and few, if any, effective treatments. We also focus on generating global awareness of PFS, providing resources for victims and their families, and lobbying drug-regulatory authorities for stricter controls on finasteride. In our role as research facilitator, we solicit donations for specific studies, and in turn make grants directly to the respective organization conducting that research. We currently do not make grants to individuals. Rather, in order to be eligible for a grant from the PFSF, researchers must be working in an official capacity within an established institution, such as university or hospital.
2. Since its inception, the PFSF has been comprised solely of three board members, none of whom have had direct contact with grant recipients. In the future, however, one or more of the board members may make a brief site visit to a grant recipient, chiefly for the purpose of monitoring the recipient’s progress and/or promoting the recipient’s published results.
3. Through adherence to this policy, the PFSF’s board of directors demonstrates the organization’s commitment to safeguarding individuals from harm.
4. The fundamental principle that underpins this policy is that all individuals without exception have the right to be free from harm and the right to protection from any such harm. The aim of this policy is to ensure that no one is harmed in any way through his or her contact or relationship with the PFSF. All PFSF board members are aware of, and act in line with, this policy.
Definitions
5. Safeguarding is a broader term than protection, as it also includes prevention. The promotion of welfare is paramount. For the purposes of this policy, safeguarding includes PFSF representatives taking all reasonable measures to ensure that the risk of harm is minimized and, where there are concerns or specific incidents disclosed or observed, taking appropriate action as necessary.
6. This policy has the following focus and scope:
a. Harm, which should be taken to include not only ill treatment (including sexual abuse and forms of ill treatment which are not physical), but also the impairment of, or an avoidable deterioration in, physical or mental health; and the impairment of physical, intellectual, emotional, social or behavioral development.
b. Abuse, i.e. a violation of an individual’s human and civil rights by any other person or persons.
7. Harm and abuse can be physical, verbal or psychological in nature, and inflicted through a single act or repeated acts. They can be planned or reactive, intentional or unintentional, and via an act of neglect or an omission to act. They may occur when a person is persuaded to do something to which he or she has not consented or cannot consent. Abuse can occur in any relationship and may result in significant harm to, or exploitation of, the person subjected to it.
8. The term “vulnerable beneficiaries” includes children and young people; people with physical or learning disabilities; people with a physical or mental illness (chronic or otherwise, including addiction to alcohol or drugs); older people; and those with a reduction in physical or mental capacity.
Scope
9. As stated in paragraph 2 above, by virtue of our work as a grant-making organization, rather than a service-delivery organization, on a day-to-day basis the PFSF has virtually no physical interaction with vulnerable beneficiaries and indeed with beneficiaries in general. We do, however, make our best efforts to provide support, via phone and/or video call, to any/all PFS patients and/or their family members who contact us. In such cases, we always remind callers that (a) the PFSF is not a medical organization, and therefore does not offer medical advice, and (b) if they are seeking medical and/or mental-health advice, they can refer to our Medical Professionals page, which is a listing of medical professionals who are familiar with PFS, and see patients who suffer from the condition.
10. Nonetheless, safeguarding remains a priority for the PFSF all PFSF board members take pains to be as sensitive as possible to the physical and psychological needs of PFS patients and/or their family members, whenever we have dealing of any kind with them.
Safeguarding Awareness for the PFSF
Procedures
11. The procedures outlined below have been prepared to help ensure that the PFSF remains aware and vigilant of best practices vis-à-vis safeguarding.
Code of conduct
12. It is expected that all PFSF board members:
a. act with integrity, respect and honesty;
b. take a collaborative, friendly and open approach, working together to deliver the activities of the PFSF in furtherance of our objectives;
c. are inclusive and respect diversity;
d. value the contribution of all who are involved in day-to-day operations;
e. aim to give all those with whom we come into contact in connection with our work a positive experience.
Handling and reporting safeguarding incidents and concerns
13. In the event that any PFSF board members become aware of safeguarding offenses, or suspected safeguarding offenses, among the PFS patient population, medical professionals treating PFS patients, researchers investigating PFS, and/or other entities with an interest in PFS, we will make our best efforts to:
a. assess the concern, allegation or incident;
b. notify, the appropriate authorities;
c. document the incident and make a record of the PFSF’s board-meeting minutes
Adopted by the PFS Foundation March 22, 2024.