Thank you for joining our Patient Peer-to-Peer Program Program aimed at connecting individuals with complex lymphatic anomalies to others experiencing similar symptoms or complications. Your involvement in this initiative is invaluable, and we appreciate your willingness to share your experiences.
As you engage with fellow participants, we kindly ask you to adhere to the following guidelines:
- Refrain from Medical Advice: While sharing your experiences is encouraged, please refrain from offering medical advice. Each individual's medical journey is unique, and they should be guided by their doctor.
- Avoid Judgment: Recognize that participants come from diverse backgrounds and circumstances. Please refrain from making judgments about others based on their experiences or decisions regarding their/their childs condition.
- Share Lived Experiences and Support: Feel free to share your lived experiences with complex lymphatic anomalies and offer support to fellow participants. Your insights and empathy can provide valuable comfort and encouragement to those navigating similar challenges.
- Offer a Listening Ear: Sometimes, all someone needs is someone to listen. Be open to lending a compassionate ear to others as they share their stories and concerns.
- Share Useful Resources: If you've come across any resources or information that have been helpful in managing your condition, feel free to share them. However, please ensure that any resources shared are credible and reliable.
- Confidentiality: Respect the confidentiality of fellow participants. Any sensitive information shared should remain confidential and not be disclosed outside of the program.
- Opt out at any time: We understand that living with a CLA/caring for a child with a CLA can be physically and emotionally demanding, and there may be times when energy levels are low. If at any point you feel overwhelmed or need to take a break from participating in the Patient Matching Program, please know that it's completely okay to opt out. If you wish to discontinue/suspend your involvement in the program, please reach out to us at support@lgdalliance.org.
- Participants in the Peer-to-Peer Program are responsible for determining the nature of their connection, whether it remains a one-time conversation or develops into an ongoing relationship. While the LGDA facilitates these initial connections, we cannot guarantee continued engagement between participants or take responsibility for ensuring that individuals follow through on their match expectations or provide ongoing support.
- Contact the LGDA Support Team: If you have any questions, concerns, or require assistance related to the Patient Matching Program, please don't hesitate to reach out to the LGDA Support Team. We're here to help address any issues that may arise.
By following these guidelines, we can foster a supportive and respectful environment where participants feel comfortable sharing their experiences and seeking support from one another.
Thank you for your cooperation and participation in this program.
