Job Title: Hidradenitis Suppurativa Buddy Peer Support Specialist
Location: Remote
$30-$40/hr, part-time, flexible days/hours
Job Description:
About the Program:
HS is a unique and challenging disease with a historic lack of effective treatments and a documented high rate of misdiagnosis. These factors often lead to frustrations and dissatisfactions, including limited available treatment options. However, the tide is turning and there are currently numerous therapies in the pipeline with encouraging results. However, this increase in developed therapeutics requires extensive clinical trials. This is why the HS Buddy Program has been developed. The HS Buddy Program is a peer support system connecting individuals currently participating in a clinical trial or who may be interested in participating in a clinical trial with a “buddy” who can help navigate decisions and challenges specific to trial involvement based on their own experience with clinical trials. This access to a peer mentor brings together people with shared experiences to learn from and support each other, providing a space where people living with HS feel understood and accepted.
About the Role:
The Hidradenitis Suppurativa (HS) Buddy Peer Support Specialist role is a flexible, remote, part-time position. If an individual (“mentee”) living with HS is interested in learning more about clinical trial participation or is already participating in a clinical trial, they can submit their information through the HS Buddy website and be matched with a "buddy,” or mentor. As a Buddy, you will be responsible for connecting with your assigned mentees and discussing your experience with the clinical trial process, listening to their perspectives and questions, and being a resource and guidepost for their own clinical trial journey. You will not be responsible for discussing any study-specific or medical information, instead acting as a support system for those HS patients who are new to clinical research opportunities. Mentees will be matched with their Buddy for a period of at least 6 months and Buddy's will be expected to maintain flexibility to meet with their mentees as needed. All discussions will be confidential.
Requirements:
At least 18 years of age
Diagnosed with Hidradenitis Suppurativa
Have participated in and completed at least one clinical trial
Generally positive attitude towards the value of clinical trial research
Flexible work availability to schedule meetings with mentees
Emotionally resourced and have a wellness routine that supports your ability to hold space for others
Organized, detail-oriented, and capable of balancing peer support and development
Comfortable with some flexibility in hours based on mentee’s availability
Have strong foundational coaching skills such as active listening, paraphrasing and summarizing
Committed to your own mental wellness and can model setting healthy boundaries
Responsibilities:
Offer virtual check-ins with mentees as frequently as needed
Build a strong relationship and trust with mentees
Proactively manage complex needs of mentees by referring them to existing resources and/or supporting as a guidepost
Ability to discuss personal clinical trial journey and act as a resource for those at various stages of their own HS clinical trial journey.
If you’re interested in learning more about participating in the HS Buddy program, please contact us at questions@hsbuddies.org.