Rare diseases of the Senses system

Rare Disease A Sense of CommunityTHE STRENGTH OF MANY: The rare disease community needs the help of the general public to muscle out rare diseases.

The rare disease community looks to the general public for strength and support.

Awareness is key to the future success of rare disease patients globally. There needs to be a coordinated effort to gain real interest by major media, consumer brands and the general public. The aggregate — the sheer mass of patients affected — comes as a shock to those that are not aware of the plight of this community. Awareness and education are key factors in helping raise the level of understanding about the needs of the rare disease community and how people can get engaged to help. It takes a village; and no one organization can go it alone. It is the collective impact that this community can have that becomes large enough to raise eyebrows and get people thinking, "Wow, this could happen to me or my loved ones; rare is not so rare."

Doing well by doing good

Slowly, but surely, we have seen traction and momentum related to new support for rare disease patients and their families. The goal is to continue to build and grow a support community that is not only made up of those impacted by rare disease, but the general public. Progressive companies, consumer brands, celebrity and healthcare philanthropists are all starting to recognize the opportunity to make an impact today for a community desperate for support. Smart companies and individuals are also recognizing that innovation is happening in rare disease and that successes in this community will have an upstream affect on more common conditions. Investing in rare disease is not only a good investment, but the right thing to do for the millions suffering and challenged by rare disease.

Patient advocates at the core

Awareness, education, empowerment, engagement, unity, strength, support and results are needed; and it has begun. Patients are driving this success; they are the change agents, they are unifying and learning from each other and they are helping build disruptive new business models. What does this mean in the long run? Those organizations that are embracing this change will do well by doing what is right by those rare disease champions who are catalyzing this revolution in healthcare.

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Strange Rare Diseases You Have to See to Believe  — Top Secret Writers
We are both curious and fearful of any new disease that we hear about. We stayed glued to the TV news if we hear of an “outbreak” of some sort. We fear as much as we investigate.

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