It is estimated that 30 million people in the United States, or 1 in 10, are living with a rare medical condition. Medical professionals often do not receive training to recognize a patient with one of the nearly 8,000 identified rare diseases. When a medical professional understands the experience of a person with a rare disease, it can improve health, create a faster and more accurate diagnosis, and create better care for individuals and families living with rare diseases.
Global Genes has introduced the RARE Compassion Program to help improve communications between the medical and rare disease communities. This program provides an opportunity for individuals or families living with a rare disease to develop a relationship with medical students to foster compassion and awareness for the challenges that patients diagnosed with a rare disease are faced with every day.
Maggie Miller, PRISMS co-founder and current Vice President, has participated in this program and says, “It is an opportunity for parents to share information about SMS to an upcoming medical professional, but also share about the challenges that caregivers, families, and the SMS individual face each day. We discussed not only the challenges in raising awareness of SMS in the medical community but the importance of appropriate medical care for our child with SMS.”
Miller continued saying, “We also discussed the challenges we face as a family and within our extended family and social circle. We discussed at length the impact on siblings, both pros and cons, school challenges, concerns about the future, and the lack of research of SMS. This program can form a dynamic relationship between parents and a future medical professional who will then take this experience and apply this new perspective to all rare patients they may encounter. The program hopes to form an alliance between patient, caregiver and professional and make inroads to an empathetic and holistic approach to patient care.”
It has been a great experience for the Miller family and their medical student was very receptive and was always prepared with questions and discussion points. It was such a great experience, the Millers have continued beyond the term of the program because of the benefits.
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, visit the Rare Compassion Program page on the Global Genes website. They are accepting applications now through February 25th.