Patients and caregivers of patients with a rare disease such as pheo para present unique challenges such as delays in diagnosis, lack of information, expertise, and treatment options.
Being diagnosed with pheo or para is often isolating and scary. Connecting with others who share the same diagnosis can be comforting. Our peer support program offers an opportunity for patients and those affected to connect with others, share knowledge and experience, provide a supportive community and help decrease isolation and fear of living with the disease.
Currently, patients and caregivers can connect in the following ways:
One-on-one Peer Support
Our one-on-one peer support program can match you up with someone who is also affected by pheo para. You can connect with them by phone, email, text or messenger. This person will allow you an opportunity to share your pheo para experience in a non-judgemental, confidential environment. Peers provide support, encouragement and information. You can connect just once or for up to two hours per month. If you would like to speak to a peer please reach out to us.
Online Peer Support Meeting
Please join us as we share and connect about our pheo para journey during this hour-long online monthly support group meeting. These meetings are led by patients and caregivers, just like you. Everyone will have an opportunity to introduce themselves. What would you like to talk about? Please share with us ahead of time by sending an email to firstname.lastname@example.org.
This is an online meeting where we can see and hear each other. If you would like to passively listen in, but you do not want to participate you can use the call in number or turn off your video after you join.
Patient Peer Support Meeting – First Tuesday of the month, 4:30 pm PT/7:30 pm ET – Register here.
Our community forum is an online, closed group where you can connect with others by posting about your own journey or reading about others. Once you have subscribed you can ask questions, learn, share your experiences, and realize that you’re not alone.
Please join our community forum here.
If you are interested in volunteering with us as a peer support volunteer in any of the ways above, please fill out the form at www.pheopara.org/volunteer.
All peer support activities are for peer support purposes only, and are not meant to direct a patient’s course of treatment. Anyone seeking medical advice should contact their physician.