Hello briansr, I too have severe chronic pain, Adhesive Arachnoiditis. Severe damage to the spine, nerves and more. I have been trying to get some attention in the field of rare diseases. "NORD" is a good place for people to start. I contacted NORD for help contacting the right people, they told me about Acting FDA Commissioner, Norman E. "Ned" Sharpless [last name has a ring to it] He was a keynote Speaker this year's Rare Diseases & Orphan Products. He is a physician and scientist. He will be going to Washington this fall for a 2 day discussions, advanced tech., rare diseases. I will be contacting him in hopes he can guide me in the rt. direction for opening the door to the right people in Wash. NORD is a great site if patients need information or help. My experience has been a positive one including always emailed a reply. If a group of us and others you may know can join the fight to get to Washington, DC..