Advocacy Equipping

Want to turn your experience into hope for others?

We are now actively seeking Ehlers-Danlos Syndrome patients who

would like to work or volunteer as advocacy consultants.

Email us, Subject: Equip


Our education style combines mentorship with peer interaction and practice. Most advocates already have a great deal of experience! As a long-time teacher, Rachel does not take a one-size fits all approach to equipping new advocates. Each one is as unique as each patient and will need help finding their own approach to the advocacy consulting world. This program aims to provide you with essential foundations for advocacy with joy, mindfullness, and quality knowledge and insight that your clients deserve and their medical professionals will expect.

Equipping Includes:

  • In-Depth awareness of the broader scope of EDS; unique presentations and typical presentations in unique patients.
  • Global approaches to testing and treatment.
  • Creating a safe space for the client to discuss their medical journey and tell their story.
  • How to review the client’s history and develop detail – Mapping the Big Picture.
  • Building goals with your client, and approaches to prioritizing needs.
  • Use of non-physician screening tools to help prepare patients for specialty appointments.
  • Communication coaching for speaking the doctor’s language. – patterns of logic, speech, and how to use them to save time and money in the doctors office.
  • Approaches to interviewing medical professionals ahead of a patient’s visit.
  • Overview of commonly used natural and integrative treatments, therapies, and non-traditional medicines – this section will include how to research medications, check for contradictions, and find reliable information on alternative treatments.
  • Developing emergency documents and other written documents for clients.
  • How to navigate State medical programs and funding resources: in relationship to EDS.
  • And more specialized skills to fit your personal interest and area of expertise.

All members will be asked to complete basic advocacy certification through the Patient Advocacy Foundation free training program, and EDS specific education through internationally recognized programs and resources.  We are committed to supporting advocacy consultants with connection to free and paid resources for continuing education, and community for advocate support.

Education Statement: RLPAC has a specialized approach to advocacy that seeks to equip advocates with the skills needed to bridge the gap between physician and patient, giving peace and stability to the patient and relieving the load of the physician through more accessible education and communication. We are passionate about quality medical care for our patients and also firmly supportive of the excellent physicians, PA’s and nurses who serve them. An excellent EDS advocate must learn to find balance between both worlds and help those in each world understand the other.