 It is estimated that 30 million people in the United States, or 1 in 10, are living with a rare medical condition. Although understanding the experience of a person with a rare disease can enable improved health, faster and more accurate diagnosis, and better care for individuals and families living with rare diseases, medical professionals often do not receive training to recognize a patient with one of the nearly 8,000 identified rare diseases. The RARE Compassion Program is an opportunity for individuals or families living with a rare disease to develop relationships with medical students with the goal of fostering compassion and awareness for the challenges that patients diagnosed with a rare disease are faced with every day. As an individual or family participating in the RARE Compassion Program you will have the opportunity to educate future medical professionals about the unique needs and challenges presented by living with a rare disease. Through the program, you will build meaningful connections with medical students helping them to better advocate for and recognize patients living with a complex rare condition. In return, you will develop a greater understanding of the medical system and improve your storytelling to enable better communication with your doctors and other medical professionals. For more information about the program visit the Rare Compassion Program page and to apply, click here. Applications will be accepted through February 25th! Please email compassionprogram@globalgenes.org if you have any questions. |
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