FIPR was created by family members who attend Veract Intractable Pain Clinic with their loved one suffering from Intractable Pain.
We started as a loosely formed group of concerned family members whose main goal was to assure timely and expert care for our family member. We advocate nationally and statewide for those with rare disorders that include intractable pain to be able to continue their treatments.
We offer our guidance to the clinic as experienced care-givers in all aspects of patient care, including legislative, state and federal initiatives, insurance issues and legalities that may affect our family members care.
We help provide education, advocacy, support and resources for those living with rare diseases and injuries that cause Intractable Pain and their families. Some of our members are receiving palliative care. Most of our family members have extremely rare conditions and genetic metabolic issues that require non-standard forms of treatment. We are aware of the immense suffering our family member experiences and the difficulty in finding treatment for their complex medical conditions, that include intractable pain.
We have launched multiple letter writing campaigns on behalf of our family members regarding their rare conditions and medical need for treatment, to federal and state agencies, legislators and other concerned parties, and have submitted numerous comments to the federal registers that apply to pain care issues. Our goal is to have an Intractable Pain specialist in every state. The need is great.
All family members and patients who are attending Veract Clinic, along with other concerned patients, their families and medical professionals nationwide are invited to join our efforts! We encourage all family members to be informed of the intractable pain treatment protocols and be involved and advocate in every aspect of their loved one’s care. This includes accompanying them to their local physician’s appointments, and advocating for them in health emergencies, and helping with adjunct treatments.
We have found:
-Intractable Pain caused by rare diseases and injuries is more than just a simple nuisance that one can wish away or simply learn to live with. It has serious life altering consequences.
-If left untreated, Intractable Pain can become a serious life threatening process that can quickly worsen.
-Intractable Pain treatment often requires long-term medical care for the underlying health conditions which includes specialized pain care.
-We have all experienced the great frustration, stigma, bias, misunderstanding, ignorance, and lack of timely care surrounding the treatment of Intractable Pain. No pain doctor in our home state knows how to treat our medically complex family member.
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-We have found the difference that excellent, skilled care and timely research can have on our loved ones life. They have regained their quality of life, and we want to make sure that those who are suffering nationwide are able to have the same experience.
-We are inspired by our brave family members, fellow family caregivers, and all fine people we know who suffer with Intractable Pain. You are our teachers! There is hope!
DISCLAIMER: This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. We do not recommend the self-management of health problems. We cannot and do not give you medical advice. The information in this website should not be considered complete. Information obtained on this website is not exhaustive and does not cover all diseases, ailments, physical conditions or their treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. If you think you may have a medical emergency, call your doctor or 911 immediately. FIPR- Families for Intractable Pain Relief does not represent to be an authority, please contact your physician. We share information from other organizations, advocates and or websites.