The RARE Compassion Project connects medical students with rare disease patients to foster an understanding of and compassion for rare patients

ALISO VIEJO, Calif. (October 16, 2019) — Global Genes®, a leading rare disease patient advocacy organization, is proud to announce the 2019 RARE Compassion Project participants who have been awarded the David R. Cox Scholarship for RARE Compassion. Launched in 2015, the RARE Compassion Project matches medical students with rare disease patients and families to foster an understanding for the unique, daily challenges faced by people living with rare diseases.

“Improving the lives of everyone affected by rare disease does not just mean developing treatments and cures, it also means helping them in other areas of their life, such as their interactions with the medical system,” said Kimberly Haugstad, CEO, Global Genes. “The RARE Compassion Project is an opportunity for patients to share their knowledge about living with rare disease with future medical professionals, an opportunity that is not available in most formal scholastic programs. The result is more understanding from both patients and physicians about each of their roles and how they can work together to improve patient care.”

Collectively, rare disease affects more than 400 million people worldwide. Yet, throughout their careers, medical professionals often do not recognize or encounter any of the more than 7,000 known rare disease types.

Medical student participants are matched with patients based on specialties. They then have the opportunity to share an essay about their experience to be considered for the David R. Cox Scholarship for RARE Compassion.

Now in its fourth year, the Cox Scholarship was originally created by a group of medical students, including Colton Margus, whose two brothers have a rare neurodegenerative disease. The Scholarship was named after an extraordinary physician who accelerated the search for a treatment to the rare and debilitating genetic disorder, ataxia telangiectasia (A-T). Global Genes is committed to growing this necessary program each year, engaging universities and encouraging increased medical student involvement.

Global Genes would like to congratulate the three recipients of the 2019 David R. Cox Scholarship for RARE Compassion:

Applications for the RARE Compassion Project are accepted year-round, while students are matched with patients or families on a quarterly basis. Eligible medical or healthcare students who match to a family or patient have the opportunity to submit an essay about their experience to be considered for the David R. Cox Scholarship for Rare Compassion beginning in Spring 2020. To view the winning essays or learn more, please visit https://globalgenes.org.

About Global Genes® 

Global Genes is a 501(c)(3) nonprofit organization on a mission to connect, empower and inspire the rare disease community. We provide hope for more than 400 million people affected by rare disease around the globe. To date, we’ve educated more than 18 million people in 134 countries about rare disease, equipped 190,000 patients and advocates with tools and resources, and provided $460,000 in support for innovative patient impact programs. If you or someone you love have a rare disease or are searching for a diagnosis, contact Global Genes at 949-248-RARE or visit the resource hub at Globalgenes.org.

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