Leading a patients alliance

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David Peña Castillo is the President and founder of The Mexican Federation of Rare Diseases (FEMEXER). Here he discusses what makes a patients association.

When we find a way to communicate the complexities of rare diseases simply, we can avoid isolating anyone and the potential to uncover important information is accelerated.

Like Horton from Dr Seuss’ Horton Heres a Who, we raise our voices waiting for someone to listen to us. To be heard we need speakers that represent information and education about our ailments. Thus, the expression “We are here!” will have a global echo.

The participation of society, the government, the institutions of the Republic and all those involved with our causes cannot be stopped at the red traffic light. We, the groups of patients — those most involved in these issues —  we must first set the amber and then the green light to the process that will kickstart the most significant efforts.

Processes have to be developed to benefit our patients.  Associations leaders must have the sense to listen to them as they have the most knowledge, investment and commitment when it comes to the diseases they are afflicted with. Accurate information regarding diseases naturally comes from being deeply involved with them. As patients leaders, it is our obligation to bring this knowledge to others.

Rare diseases are often viewed as a kind of inhospitable islands that no one wants to wash up on. When we find a way to communicate the complexities of rare diseases simply, we can avoid isolating anyone and the potential to uncover important information is accelerated.

Naturally, the patients who dedicate themselves to curing rare diseases end up understanding the problem of the unknown after going through the labyrinth of uncertainty, depression and rejection. This is inevitable. But, each of these stages of weakness open opportunities to provide strength and shines the spotlight on what is yet to be overcome. It is when we begin to understand what for, that we forget why.

Patients are seeking the formula that guides them towards answers and results. There comes a point where a leader is needed to drive the efforts of the group.

Leadership is a double-edged tool. One side represents vast possibilities for dialogue, planning, management and action. The other represents the extraordinary obligations that come with being a leader. They will always have more obligations to fulfil than rights that can be served.

To undertake our tasks we must survive, not as the strongest or the most intelligent, but as the one that best adapts to the environment. We are used to reacting, however, on many occasions the reaction is too late. The leader must be permanently attentive to anticipate the most complicated conditions. The formula must come down to the planning in calm times and the execution in more manic times.

What our patients need is a guide, a supporter and a conciliator. That is what makes a leader.

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