Making a Difference: Third Rock Ventures Celebrates Rare Disease Day
“Making a difference in people’s lives” is key among Third Rock Ventures’ core values because it reminds our team that we have as much of a responsibility to patients as the life sciences companies we build do. To reinforce that, we are proud to join with more than 700 patient groups, foundations, medical schools and biotechnology companies around the world to celebrate Rare Disease Day.
About the Rare Disease Community
Physicians have described more than 6,000 rare disorders, many of them caused by genetic mutations. Although only a small number of people may be affected with any one of these, millions of people worldwide suffer from rare disorders. Too often, these disorders are poorly understood, research efforts are minimal and therapies are inadequate or non-existent. Celebrated every year on February 28, Rare Disease Day recognizes the plight of individuals burdened with these disorders, and it incentivizes groups to call attention to the needs of these individuals.
Understanding Patients with Rare Diseases
The team at Third Rock began recognizing the special needs of people with rare disorders in 2008. Two or three times per year, we invite a person with a rare disorder and his or her family to visit the firm and to speak openly about how the disorder has affected them, as well as to hear their dreams for the future. In the past we have had visits from people with X-linked hypohidrotic ectodermal dysplasia (XLHED), a developmental disorder affecting teeth and skin and phenylketonuria, a genetic metabolic disorder that if not properly treated causes mental retardation. This year we met a young mother and chef born with sickle cell anemia, a genetic blood disorder that can cause many problems including frequent, intensely painful episodes of bone and chest pain.
Living our Core Values
In recognizing rare diseases throughout the year, we hope to raise awareness within the life sciences community of these patient groups desperately seeking innovation that may treat these rare and painful disorders. Raising our overall awareness of rare diseases will help drive our passion, affirm our integrity and most importantly, make a difference in people’s lives. For more information please visit www.rarediseaseday.org.
