The New Jersey Rare Disease Alliance is made up of individuals working to spread awareness for rare diseases. These individuals include patients, caregivers, physicians, advocates, healthcare professionals and legislators who are dedicated to the cause. In New Jersey alone, there are 800,000 patients living with a rare disease.
The last day of February each year is Rare Disease Day worldwide and March is rare disease month. On March 16th, the New Jersey Rare Disease Alliance hosted an event in Trenton, New Jersey to bring together the rare disease community. A panel including a representative of Leonard Lance, Diane Dorman from NORD, Dr. Charles Stanley from CHOP, Dr. Stewart Peltz from BioNJ and other exemplary figures in the rare disease space spoke on various rare disease topics. The panel was very informative and one could tell that they truly believed in the work that they do to benefit others.
The most rewarding part of the event were the patient stories. Countless individuals stood up in front of a large crowd to passionately tell the stories of their children, spouses, family members and friends suffering from a rare disease. The emotions filled the room as several people cried tears of sorrow and of joy as they listened to the stories unfold. One father stood up and pointed to his son and said, “This is my miracle child”. Those five simple words humbled the entire room.
At SmithSolve, we work closely with our clients and the patient communities, but there is only so much you can feel working behind a desk. Attending the New Jersey Rare Disease Alliance event, hearing these patient stories and speaking with the caregivers after their presentations was an experience beyond words. We feel we are lucky that the work we do each day can influence the lives of those suffering from a rare disease.