When I first stepped out into the unknown political-regulatory world to try to improve the development process for rare disease treatments, I did not know what I did not know, but I assumed the Foundation would find out soon enough. I assembled a group of people of different talents to help me take on the challenge. Among these people was Julia Jenkins, who had experience in lobbying California on behalf of labor and other organizations, and who would help us devise our campaign to improve the regulatory process. As Julia does, she dove in head first into the rare disease world to try to figure out what was going on, and she realized immediately that many groups are not really talking to each other at all. Few of the rare disease groups even knew what anyone else was doing. Most other issue-focused groups active on Capitol Hill have some communication forum, loosely formed and maybe even combative, where they sit down and talk about what they are doing. This might help find supporters or it might just help avoid inadvertent and counter-productive interference.
Julia came to me and said that the rare disease groups are fragmented and isolated. They need to talk to each other just to know what is going on, but also to help each other when they can. I had no idea about the process or what goes on at Capitol Hill, but from my years of experience in managing, I know that when someone comes to you convinced with an idea and offering to do a lot more work to make it happen, you have to go with it. I told Julia to go for it. The EveryLife Foundation would support the lunches or meetings and just help it organize and then we would see what happened. My goal here was consistent with several things we do at the Foundation outside of our campaign: Do good for the rare disease community, irrespective of the ideas or goals. This is the essential ingredient of a high quality national organization that aspires to be the big tent and help everyone. The EveryLife Art contest, RareArtist.org, the North American Metabolic Academy (NAMA of the society for metabolic disorders [SIMD]), and my pro bono consulting for dozens of rare disease groups whenever they need it, are all part of that effort.
Julia floated names by early participants and the name Rare Disease Legislative Advocates stuck; RDLA would have no goals of its own other than to bring together the rare disease legislative community and allow them to communicate. It would not be an avenue for our Campaign to improve development of rare diseases, but a forum run by everyone. We would just be the caretakers. Julia made sure of that by soliciting agenda from anyone attending and our own goals were only talked about a couple times out of 9 meetings . I have attended only a couple times to minimize my influence on the proceedings.
Of course, any good meeting starts with free food, and we would pay for that. Hosts would donate space for the meeting which moved from place to place in DC and we would just open a good forum to let people talk about what they are doing. They could seek support from others, inform others of their big ideas, or just solicit help in contacting people or finding connections. As time went on, we began donating other things like access to our subscription to the letter-writing system CongressWeb and also providing guidance to smaller organizations to help them achieve their goals. All meetings are accessible via conference call so those organizations without a representative in DC can also participate.
Julia has consistently organized and made things happen, and in a field where negative momentum consumes so many smaller organizations. To have a dynamic, driven talent pushing it forward has been great. I have spent a lot of my life being the engine to drive things to completion, and I am so happy to see that Julia has the drive to do it. The RDLA group has grown and it has adapted to help organizations get what they needed. I am really proud of what RDLA has become and it fits my goals always of doing good for others and enjoying the successes that result.
Recently at an RDLA open meeting, a national organization read an odd statement without any warning or consultation, that they were withdrawing from the RDLA. This is a strange request because RDLA has no membership and so there is nothing to withdraw from; just don’t show up. The national organization has also seldom attended the meetings, even though they have been invited to every meeting. This attempt to interfere with other rare disease groups’ right to organize was concerning to me. The national organization in question was originally built by a dedicated mother whose goal was to bring the rare disease community together, a point that appears lost on that organization now. The new leadership wants to control the agenda, but rarely accepts any input from anyone. Of course, if the national organization was able to tell us what their agenda is and put it up somewhere on the web, we would at least have something substantive to talk about rather than just posturing.
RDLA has been meeting regularly to try to bring in other organizations to at least talk to each other, and now is focused on the possible agenda for the Rare Disease Caucus. The national organization has conducted no such search process or open forum to reach rare disease common ground among all organizations. The national organization is trying to hold onto power by dictatorial decree and shut out the opinion of other rare disease groups.
Conflict between organizations and a divided community hurts everyone. Neither RDLA, nor any one group should control what rare disease patient groups want. I look to RDLA to try to help communicate and coordinate, but in the end, every group has to set its own agenda and drive its goals. If RDLA can help synchronize the independent forces to accomplish mutual goals, and support each other when possible, then that would be great. If RDLA can help rare disease patient groups get some logistical and tactical help or access to systems which they cannot afford on their own, that is great. At this point, we will do what we can to support RDLA and help any rare disease organization achieve its goals. The rare disease community must work together for it to be successful. This is what a true national big tent organization should be doing.
Keep an eye out for RDLA’s new website www.RareDiseaseLegislativeAdvocates.org. It will have all the latest information on Rare Disease Legislation.
