A Rare Opportunity

Every year on the last day in February, a very special community comes together to recognize those people affected by rare diseases. Families, friends, practitioners, industry and so many more, unite around the need to bring greater attention to the profound need to help those living with rare diseases. It’s an opportunity to be inspired by those individuals who never let themselves be defined by their medical condition. It’s an opportunity to help fight for funding and the advancement of science. It’s an opportunity to educate your own social network. And it’s an opportunity to look within to see how you specifically might be able to make a meaningful difference.

Over the past 31 years, Acom Healthcare has been privileged to collaborate with the rare disease community and has helped advocate and educate on more than 20 different disorders. In this time, we have met people of all ages from around the world. Although bonded by circumstance that no one would choose, the most remarkable commonality of these people is their outright resilience and determination to live their lives.

Today, more than any other time in history, there is a wave of research and drug development that provides reasons to hope. Thanks to pioneers like Henri Termeer, there are biotechnology and pharmaceutical companies that have advanced life-changing treatments. But for all of the progress that has been made, there is a far greater void that must be filled.

Consider these facts from Global Genes: 

  • There are more than 7,000 different rare diseases that have been identified to date and the list continues to grow.
  • In the United States alone, 30 million people are living with a rare disorder.
  • Approximately half of the people in the world affected by rare diseases are children.
  • 95% of rare diseases have no FDA-approved treatment.
  • Approximately 50% of rare diseases don’t have any dedicated foundation supporting research.

We can do better. And we can do it together. On Wednesday, February 28, 2018 let your voice be heard. Participate in a Rare Disease Day event. Use your social media network to let others know. Volunteer your time. Make a contribution. And let the day serve as a springboard to your further involvement in the Rare Disease Day community.

by Jonathan D. Katz