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Patient & Caregiver Advocate Bulletin Board

* Are you looking for other Patient Advocates to help with a project?
* Want to share information about an upcoming event?
* Working on an exciting project that you'd like to share or talk more about?

Maybe you want to profile other’s stories on your blog or podcast, or perhaps you are working on a local event that you’d love to get other Patient Advocates involved in or attend.

Feel free to post information about any events, activities, or projects you'd like to spread the word about or share!

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*Please do not use this thread for any capital gain (examples: selling of services, recruitment for projects which you’ll receive compensation for) or solicitation (example: GoFundMe).

The Social Health Network has the right to remove postings that we deem violate our Community Rules. https://health-union.com/community-rules/

  1. Hello , I am super excited to share our new podcast featuring chronic illness, pain and disease. We are looking to share stories on our podcast and would love for those in this community to help us out and share your personal experiences with chronic pain. It is our belief that what we feed our minds daily our bodies react even worse than what’s diagnosed. We would like to share positive energy and support for those suffering daily.
    Please consider sharing your story with us and help those who are lost in their fight!
    Please find my website www.chronictruthpodcast.com

    or click the link

    https://form.jotform.com/243175033311141


    Thank you for your love and support you have shown on my new journey in advocacy! TOGETHER we are STRONG
    The Chronic Truth Podcast

    1. How exciting !! Keep us posted on this new adventure & how things progress with this podcast. It's an incredibly important topic & thank you for helping to shed light on it! Congrats!

  2. Hello! My name is Brooke Higginbottom. I’m Sociology Master’s student at the University of Victoria (UVic), in British Columbia, Canada. Currently, I am working on my Master’s thesis and am looking for participants for my research study.


    I am looking for anyone who has been diagnosed with a sexual disorder/dysfunction or who identifies as having difficulties with sexual functioning (such as perceived low desire, arousal, organism frequency or intensity, and/or the presence of sexual pain) to take a 10–15-minute survey focusing on their experiences and perspectives towards sexual difficulties and healthcare. If you’d like to participate, here is the link to the survey: https://www.surveymonkey.ca/r/K52BVF2


    Please read the consent form at the beginning of the page before starting the survey. Note that you must be over 19 to participate in the study! Survey responses are anonymous and will not be public. In addition, if you are interested in participating in an interview, you can provide an email at the end of the survey. Potential interviewees will be selected at random.


    This project focuses on those with sexual disorders/sexual difficulties and their experiences within the healthcare systems. Additionally, I will be looking into the ways asexual people experience healthcare systems. This research will promote healthier viewpoints of sexual arousal, address potential stigma within the healthcare system and society, further improve understandings of asexuality, and combat bigoted assumptions. It is my hope that my research will add further depth and legitimacy to both the experiences of asexuals and those with sexual difficulties. I hope that from this project, a healthier distinction between these two identities will be drawn and that we will move towards normalizing lower sexual desire/attraction.

    If you want to know more about me, my study, my reasoning for this research topic, or have any further questions, please contact me at brookehigginbottom@uvic.ca. or my supervisors, Dr. Thea Cacchioni at tcacchio@uvic.ca or Dr. Steve Garlick at sgarlick@uvic.ca.
    A poster of my survey (which I have been allowed to share here) that provides a brief overview of my study and a QR code for those who want to access it using their phones.

    1. Nov 15-17 I will co-host the virtual Annual Sickle Cell Caregiver Summit. Registration is open https://scdcaregivers.org.

      1. Awesome thanks everyone I am going to be in touch !

        Please read our rules before posting.