Peer Support

Many times individuals or family members of individuals who are newly diagnosed with cavernous angioma (cavernoma, cavernous malformation) or facing a turning point in their illness would like to develop a one-on-one relationship with another person who has had similar experiences. Angioma Alliance has a peer-matching program to fill this need. Peer support is based on the philosophy that the person who can really understand you is a person who has been there. Links at the bottom of this page offer you the opportunity to be matched with a trained Peer Support Volunteer or to volunteer to offer support to others.

What is a Peer Support Volunteer?

A Peer Support Volunteer offers a unique and valuable service to others struggling to learn to live with one or more cavernous angiomas. The Volunteer is directly affected by cavernous angiomas and wants to share his or her experiences with others. By offering a friendly ear, the Volunteer can help ease the fear and isolation that may come with a diagnosis of cavernous angioma(s).

How does the relationship work?

The goal of peer support is to link people who have experienced the challenges of living with a cavernous angioma(s) with others facing similar difficulties. To be matched with a Peer Support Volunteer, you will complete a Peer Support Request form. The form asks for information about you and your current situation that will allow us to provide the best match. You will receive an email acknowledgment that we have received your form, and we will attempt to make a match within 1-2 weeks. Your assigned Peer Support Volunteer will contact you once the match has been made.

Depending on the situation, a match may involve a single exchange or follow-up contacts over an extended period of time. Contacts may be by phone, email, or video call such as Skype or Facetime.  Eventually, peers may meet in person should you and your Peer Support Volunteer live close to each other.

What are the limits of the relationship?

Peer support does not replace professional help. Peer Support Volunteers do not attempt to provide psychotherapy or take the place of a physician. The peer supporters know that, even for individuals affected by the same genetic condition, everyone’s medical needs are unique.

The Peer Support Volunteer does not:
• Provide counseling or therapy
• Lend money
• Give medical advice
• Do personal favors
• Provide transportation
• Come up with all the answers

Although we have screened and provided training to all peer support volunteers, Angioma Alliance assumes no responsibility for any injury caused by the relationship. Please contact us immediately at support@angioma.org if you believe a peer support volunteer has acted inappropriately or if you have other concerns about the relationship. Peer support volunteers have been asked to keep all information in the strictest confidence but there is no absolute guarantee of this.

How do I obtain a match?

To be matched with a peer support volunteer, please follow the appropriate link below. 

If you are the affected individual, please complete a Patient Peer Request form.

If you are a parent, spouse, friend, or other family member of an affected individual, please complete the Family Peer Request form.

If you experience a problem with either of these forms, please email your request with your contact information and a little bit about your situation to support@AngiomaAlliance.org.

How do I volunteer to become a peer supporter for the Angioma Alliance?

Do you have a cavernous angioma or are you a parent or caretaker? Have you been relatively stable physically and emotionally for the last six months? Then you may be able to help others who are new to cavernous angiomas. To volunteer to become a peer support volunteer, please Click Here.  If you experience a problem with this form, please email your information to support@AngiomaAlliance.org.