February 28th is an important day for the rare disease community. Rare Disease Day is an international effort to raise awareness among the general public and decision-makers about rare diseases and their impact on patients’ lives. Since its first official observance in 2008 with 18 countries participating, this important day grew to include events in more than 90 countries last year.
This year, Homology is recognizing and raising awareness of the entire ecosystem of people who support a person with a rare disease, including family members, friends and caregivers. With approximately 7,000 rare diseases identified, 1 in 10 people have a rare disease and many more are impacted.
As we counted down to Rare Disease Day, Homology employees shared their personal experiences with rare disease. The data showed:
- 30% of employees are impacted by rare disease as defined by either a personal diagnosis or the diagnosis of a family member/close friend/loved one
- Those impacted know an average of 3.36 people diagnosed with a rare disease, ranging from 1 – 15 people (not including people known through work in the biotechnology industry)
- Phenylketonuria (PKU, for which Homology has both gene therapy and gene editing development programs), Ehlers-Danlos syndrome, familial Mediterranean fever, cystic fibrosis, sickle cell disease, Huntington’s disease and amyotrophic lateral sclerosis were the most commonly cited rare diseases
As a visible and tangible reminder of the far-reaching impact of rare disease, Homology employees wore color-coded shirts today to help everyone “see the need” to cure genetic disease. Those wearing blue shirts identified as being personally impacted by a rare disease as defined above.
Today, and every day, Homology is dedicated to bringing awareness to the patients and the entire community of people helping those with a rare disease. Whether we or someone we know has a rare disease, we are united in our mission to cure genetic disease.