1. Bring awareness of our family members with rare disorders and legitimate severe, Intractable Pain disease to all concerned parties.
2. Advocate for access to standard and non-standard pain therapies, including opioids and non-opioid medications, appropriate physical therapy, electromagnetic therapies, hormonal support, and full comprehensive medical care.
3. Advocate for access to qualified physicians in every community who can and will provide standard and non-standard therapies for our family members with rare disorders and unique medication metabolism. No patient should be left to suffer in pain in any community.
4. All policies, guidelines and decisions that affect pain care on the federal, state and local level MUST include an Intractable Pain patient or family member in the process. “No more about us without us.. Ever.”
5. Create support networks for patients and their families. We want to make sure there is a qualified physician in every state that is willing and able to treat those with Intractable Pain. Patient and family well-being is upmost of importance. We want to make sure there are support networks for the physical, emotional and spiritual well-being of family caregivers.
We are all in this together!