FARA is fortunate to join many umbrella organizations in advocating for the rare disease community. Together, we bring the patient's voice, concerns and needs to a wider audience as an American FA patient changes from one in 5000 FA patients to one in 30 million people with a rare disease, or 10% of the US population.
Several of these organizations offer opportunities to patients for education, advocacy training, networking and exposure. Together, your voice adds to the conversation that shapes our laws, healthcare, clinical trials and much more. Some of this is possible through events such as a workshop or summit, but travel is not required to be an advocate. Throughout the year, you can gain information on current issues that affect the rare disease community and learn what each of us can do to help raise awareness and support through newsletters and webinars. Sometimes what is needed is as simple as sending an email or calling a legislative office.Add a comment