Julie Rauch, RN
Julie went from nurse at the bedside for a decade to rare disease patient in the bed. She combined what she learned as a nurse and navigating situations such as doctors who didn’t understand her conditions, health insurance issues, Social Security Disability, IEP’s and 504 Plans for her children (who also have hEDS, Chiari, POTS, and MCAS), and learning how to find joy and purpose in this new life. Julie now works completely pro bono for people with everything from health insurance claims, applying for disability, working with schools, preparing for doctors’ appointments, attending doctor’s appointments and school meetings with clients, accessing appropriate care, and making difficult decisions about a loved one’s care. She has even helped with funeral planning and designed several funeral programs for families. If it’s in her ability to meet her clients’ needs, Julie does it.
Julie has been married to her best friend for 27 years this September. They have four children, one who just graduated with her doctorate in PT and now does pediatric PT. She even has two patients with hEDS. Their other daughter, Ashlyn, who was at the conference in DC, is in her masters program for biomedical research. And Julie and her husband have identical twin 16 year old boys, one of whom plans to also go into the healthcare field.
My credentials are:
Retired RN
BCPA
Member of The Alliance of Professional Health Advocates (APHA)
Child Neurology Foundation (CNF) Family Support Specialist
Administrator of regional EDS & Chiari Support Group for SE Virginia and NE N. Carolina
