Volunteer Policies

Policy

K.I.D.S. IQ Project is a non-profit foundation focused on the advancement of drug treatments for reversible Intellectual Disability (ID) disorders, specifically those arising from a gene deletion or mutation. Our initial focus is on Kleefstra syndrome (KS) and related ID disorders that have a potentially synergistic approach to drug development. K.I.D.S. IQ Project also aims to enhance the quality of life for those living with such ID disorders and their associated health issues by providing important educational information, programs and services. Updates to our mission may be made periodically and can be viewed at K.I.D.S. IQ Project.

In pursuing our mission, K.I.D.S. IQ Project serves the interests of specific families as well as the broader public. In executing against our mission, employees and volunteers work with each other and the public at large. The following Volunteer Privacy Policy (the “Volunteer Privacy Policy”) is designed to allow K.I.D.S. IQ Project to preserve legal and regulatory compliance, as well its integrity and credibility with families and the public and within the K.I.D.S. IQ Project organization. This Volunteer Privacy Policy applies to all volunteers, employees, Councils, Committees, Advisory Boards, Board members, as well as consultants, contractors and third-party service providers working on behalf of K.I.D.S. IQ Project. References to “volunteers”, “employees” and “you” below, is intended to be inclusive of all the groups mentioned above, whenever practical or applicable.

The Volunteer Privacy Policy is organized into categories, as follows:

Personal Information and Personal Health Information

Unless you have have received consent or except as required by law (in which as you must notify K.I.D.S. IQ Project of such consent or legal requirement), you will not share any Personal Information that has been collected, such as names, dates of birth, company names, titles, addresses, telephone numbers, fax numbers, e-mail addresses, photos and payment information (such as credit card numbers), with any person or entity other than those affiliated with K.I.D.S. IQ or acting on behalf of/with K.I.D.S. IQ. Unless you have have received consent or except as required by law (in which as you must notify K.I.D.S. IQ Project of such consent or legal requirement), you will also not share any Personal Health Information that has been collected, such as health data, photos, medical history and genetics reports, with any person or entity other than those affiliated with K.I.D.S. IQ or acting on behalf of/with K.I.D.S. IQ. The collection of Personal Information and Personal Health Information shall be limited to that which is necessary for the purposes identified by K.I.D.S. IQ Project Officers or Directors. Personal Information and Personal Health Information shall be collected by fair and lawful means. The knowledge and consent (whether implied or otherwise) of the individual are required for the collection, use, or disclosure of personal information, except where inappropriate.

Retention

Personal Information and Personal Health Information shall be retained only as long as necessary for the fulfilment of those purposes. All information and data belongs to K.I.D.S. IQ Project and must be destroyed and/or provided to K.I.D.S. IQ Project at its request.

Opt-Out

You must notify K.I.D.S. IQ Project of any opt-out requests by submitting an email to the Privacy Officer at privacy@KidsIQProject.org

Security and Safeguards

1. Only secure electronic data storage sites should be used at all times when storing any information, including but not limited to Personal Information and Personal Health Information
2. Electronic mail platforms with SSL or other similar security measures should be used at all times when electronic mail is involved
3. Electronic mail and online data storage accounts (or other similar online accounts) may only be accessed from a password protected private network
4. No physical storage of information is allowed, unless expressly written consent has been granted by K.I.D.S. IQ Project, in which case, security measures must be put in place by you to ensure the information is safeguarded (for example, cabinets are securely locked)
5. Any information stored on a personal computing or mobile device must possess double authentication, which shall include password protection for the device as well as password protection for the information itself

Online Policy Changes

This Volunteer Privacy Policy may be modified from time to time. Any changes to the Volunteer Privacy Policy will be posted on the K.I.D.S. IQ Project.

Implementation

Strict observance of the Volunteer Privacy Policy is fundamental to the legal compliance, activity and reputation of K.I.D.S. IQ Project. It is essential that all volunteers, employees, Councils, Committees, Advisory Boards and Board members, as well consultants, contractors and third-party service providers working on behalf of K.I.D.S. IQ Project adhere to this Volunteer Privacy Policy. By signing a Volunteer Service Agreement, I acknowledge that I have read, understand and agree to the Volunteer Privacy Policy of K.I.D.S. IQ Project and I understand that such adherence is a condition of my employment, volunteer or contractual work. I understand that a violation of the Volunteer Privacy Policy may be grounds for termination as a volunteer or, in the case of an employee, immediate dismissal for just cause without notice or pay in lieu of notice.

Policy

K.I.D.S. IQ Project is a non-profit foundation focused on the advancement of drug treatments for reversible Intellectual Disability (ID) disorders, specifically those arising from a gene mutation. Our initial focus is on Kleefstra syndrome (KS) and related ID disorders that have a potentially synergistic approach to drug development. K.I.D.S. IQ Project also aims to enhance the quality of life for those living with such ID disorders and their associated health issues by providing important educational information, programs and services. Updates to our mission may be made periodically and can be viewed at K.I.D.S. IQ Project.

In pursuing our mission, K.I.D.S. IQ Project serves the interests of specific families as well as the broader public. In executing against our mission, employees and volunteers work with each other and the public at large. The following Code of Conduct and Ethics Policy (the “Code”) is designed to allow K.I.D.S. IQ Project to preserve legal and regulatory compliance, as well its integrity and credibility with the public and within the K.I.D.S. IQ Project organization. This Code applies to all volunteers, employees, Councils, Committees, Advisory Boards, Board members, as well as consultants, contractors and third-party service providers working on behalf of K.I.D.S. IQ Project. References to “volunteers” and “employees” below, is intended to be inclusive of all the groups mentioned above, whenever practical or applicable.

The Code is organized into categories, as follows:

Service

1. Always act with fairness, honesty, integrity and openness; respect the opinions of others and treat all with equality and dignity without regard to gender, race, colour, creed, ancestry, place of origin, political beliefs, religion, marital status, disability, age or sexual orientation
2. Promote the mission and objectives of K.I.D.S. IQ Project in all dealings with the public on behalf of K.I.D.S. IQ Project
3. Provide a positive and valued experience for those receiving service within and outside the K.I.D.S. IQ Project organization

Accountability

1. Act with honesty and integrity and in accordance with any professional standards and/or governing laws and legislation that have application to the responsibilities you perform for or on behalf of K.I.D.S. IQ Project. K.I.D.S. IQ Project is an international organization which may have regional and branch operations. K.I.D.S. IQ Project’s policies apply to all volunteers and employees, irrespective of geographic location. Policies are reviewed every 3 years or sooner if an issue arises with its interpretation and use
2. Comply with both the letter and the spirit of any training or orientation, if provided to you by K.I.D.S. IQ Project, in connection with those responsibilities
3. Adhere to the policies and procedures of K.I.D.S. IQ Project and support the decisions and directions of the Board of Directors and its delegated authority, including the President or Chief Executive Officer
4. Take responsibility for your actions and decisions. Follow reporting lines to facilitate the effective resolution of problems. Ensure that you do not exceed the authority of your position

Conflict of interest

Conflict of interest arises when a person participates in a decision about a matter which may benefit or be seen to benefit that person because of his/her direct or indirect monetary or financial interests affected by or involved in that matter.

It is the duty of any person taking part in the operations of K.I.D.S. IQ Project to immediately disclose to the Board of Directors or President any potential conflicts of interest that may arise, while simultaneously also refraining from proceeding on the matter until it is addressed by the Board or President. In general, K.I.D.S. IQ Project does not support situations in which conflicts of interest arise. However, the Board or President may make exceptions under certain circumstances where facts and conflicts have clearly been disclosed and pursuing such a situation does not violate any applicable laws; in this instance, if practical, the Board or President may also elect to remove the conflicted person from any applicable voting on the matter.

Confidentiality

1. Respect and maintain the confidentiality of information gained as a volunteer or employee, including, but not limited to, all computer software and files, K.I.D.S. IQ Project business documents and printouts, patient data, and all volunteer, employee membership, donor and supporter records
2. Respect and maintain the confidentiality of individual personal information about persons affected by a disability/syndrome gained through your role in K.I.D.S. IQ Project, for example, in support groups, meetings, email exchanges, conference or in service programs

Sexual or personal harassment

Sexual harassment is any conduct, comment, gesture or contact of a sexual nature that one would find to be unwanted or unwelcome by any individual, or that might, on reasonable grounds, be perceived by that individual as placing a condition of sexual nature on employment, volunteer or career development.

Personal harassment means any conduct whether verbal or physical that is discriminating in nature, based upon another person’s race, colour, ancestry, place of origin, political beliefs, religion, marital status, physical or mental disability, sex, age or sexual orientation. It is discriminatory behaviour, directed at an individual, which is unwanted or unwelcome and causes substantial distress in that person and serves no legitimate work-related purpose.

K.I.D.S. IQ Project has a zero tolerance policy with respect to Sexual/Personal Harassment. Sexual/Personal Harassment in any form is strictly prohibited and may be grounds for termination as a volunteer, or, in the case of an employee, immediate dismissal for just cause without notice or pay in lieu of notice.

Procedures for the care of others who may be vulnerable because of age or disability

In the course of providing K.I.D.S. IQ Project’s services, our volunteers, employees and third-party service providers may come into contact with vulnerable individuals. These individuals are those who may be at risk of harm or harassment because of their age or disability. When this occurs, the following procedures should be followed:

1. Where practical to do so, K.I.D.S. IQ Project-related one-on-one meetings with persons who may be vulnerable, will be conducted in a business-like setting, public location or in an area that is private but visible to others
2. K.I.D.S. IQ Project volunteers, employees and third-party service providers who seek to initiate personal contact with vulnerable persons, are asked to seek prior approval from the appropriate employee/leadership volunteer, and, in the case of children/youth, from the parent/guardian

Scientific research projects and/or related work

For any employees or volunteers involved with funding scientific research projects and/or related work, whether involving animal/human testing or not, any funding agreements much include a clause or provision that requires the research team to abide by local laws, including but not limited to those involving animal and human testing.

Implementation

Strict observance of the Code is fundamental to the legal compliance, activity and reputation of K.I.D.S. IQ Project. It is essential that all volunteers, employees, Councils, Committees, Advisory Boards and Board members, as well consultants, contractors and third-party service providers working on behalf of K.I.D.S. IQ Project adhere to this Code. By signing a Volunteer Service Agreement, I acknowledge that I have read, understand and agree to the Code of K.I.D.S. IQ Project and I understand that such adherence is a condition of my employment, volunteer or contractual work. I understand that a violation of the Code may be grounds for termination as a volunteer or, in the case of an employee, immediate dismissal for just cause without notice or pay in lieu of notice.