This Information Sharing Consent and Confidentiality Form ("Form") is intended to document your voluntary consent to the collection, use, and sharing of your personal information, as well as the commitment of all involved parties to maintain the confidentiality of that information.

This form is also intended to authorize the voluntary sharing of healthcare and diagnostic information between private individuals, and to establish clear confidentiality obligations between the participant and Project Change.

I hereby acknowledge and confirm that I have sought the assistance of Project Change to connect me with other persons diagnosed with Fibrous Dysplasia/McCune Albright Syndrome and/or caregivers of persons diagnosed with Fibrous Dysplasia/McCune Albright Syndrome.

I authorise Project Change to collect, use and share my personal contact information (as outlined in the participant information above) for the purposes of connecting me with patients and/or caregivers in the Fibrous Dysplasia/McCune Albright Syndrome community.

I understand and acknowledge that:

1. The information sharing is for the sole purpose of connecting me to other patients/caregivers for personal communication, information sharing and networking with other patients and caregivers in the Fibrous Dysplasia/McCune Albright Syndrome community.
2. Project Change are not privy to any of the information shared between the participants in this information sharing agreement/process.
3. Project Change take no responsibility for the participants reliance on any information (medical, scientific, research or otherwise) shared between participants in this information sharing agreement/process.

The information to be shared may include, but is not limited to:

1. Contact details as per the ‘Participant Information’ above; and
2. Diagnosis information as per the ‘Participant Information’ above

Information may be shared with the following individuals, organizations, or agencies (list names or categories):

1. Persons, patients and caregivers in the Project Change community registered with Project Change for the Information Sharing agreement/process.

I understand that only the minimum necessary ‘Participant Information’ will be shared with parties for the stated purposes

The individuals authorized to receive my information and the participants agree to:

• Treat the information as confidential and secure
• Use the information only for the purpose(s) identified in this Form
• Not disclose the information to any unauthorized third party
• Comply with all applicable privacy laws and regulations
• Keep all shared health information strictly confidential
• Not share or disclose my health information to others without my explicit written consent
• Use the information only for the purposes I have specified
• Protect any written or digital records of my health information securely
• Immediately inform me if any of my information is lost, misused, or disclosed inappropriately

You may revoke your consent at any time by providing written notice to Project Change.

I understand that:

• Once information is shared, the receiving party is responsible for its protection
• Once information is shared, the receiving party may contact me (the participant) via email and any exchange of further contact information (address, phone number, social media profiles, etc.) are an exchange of personal information between the participant and the receiver directly.
• This form does not authorize the release of information to healthcare providers or insurers
• I am under no obligation to share medical information pertaining to myself and/or the person for whom I am caregiver and do so voluntarily
• This consent is not a waiver of any rights under applicable privacy laws
• The private individual(s)/participant(s) with whom personal information is shared may not be covered by state/federal rules governing privacy and security of data in the participants jurisdiction and may therefore be permitted to further share the information that is provided to them
• I have the right to request a copy of this signed form for my records
• I may refuse to consent or withdraw consent at any time, which may affect the communication I receive from Project Change or the participant
• My information will not be sold, and it will only be used for the purposes I have agreed to