-

Global Genes Launches 8th Annual RARE Compassion Program, An Experiential Education Initiative Connecting Medical Students with Rare Disease Families

Program Fills Training Gaps Across Rare Diseases, Supports Mutual Recognition of Distinct Experiences and Needs to Build a Stronger, More Equitable and Informed Healthcare System

Outstanding Participants of 2021 Program Awarded David R. Cox Scholarship

Applications Open Through February 25, 2022

ALISO VIEJO, Calif.--(BUSINESS WIRE)--Global Genes, a leading rare disease patient advocacy organization, today announced the opening of its eighth annual RARE Compassion Program. The RARE Compassion Program connects medical students with rare disease patients and families to help foster meaningful doctor-patient relationships, inspire careers in rare disease care and research, and ultimately, through patient-centric listening and interactions, build the next generation of future medical professionals as key advocates for their patients.

Although an estimated 30 million people in the United States are living with one of nearly 8,000 identified rare diseases, medical professionals do not often receive training in recognizing these patients. Understanding the experience of a person with a rare disease can enable improved health, faster and accurate diagnosis, and experiences for rare disease families.

Global Genes is also pleased to announce the winners of the 2021 David R. Cox Scholarship, awarded to three individuals who successfully completed the RARE Compassion Program.

In commenting on the impact of the program, Balaji said, “I learned about how important it is to have patients involved as patient advocates and as key participants who shape study designs and research about their conditions. It's important to take into account a patient's experiences with rare disease and prioritize shared decision making, since they are often the experts on their disease.”

The application window is currently open and closes on February 25, 2022.

For more information about the program and to submit an application, please visit https://globalgenes.org/compassion.

Global Genes is grateful for the many supporters that have helped to run this program, as well as the patients, their families, and the students who dedicate their time to fill in what’s missing in equitable healthcare. Global Genes also thanks the individuals, families and students for their time in volunteering to participate in this important program.

About Global Genes®

Global Genes is a 501(c)(3) nonprofit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. In pursuit of our mission, we connect, empower, and inspire the rare disease community to stand up, stand out, and become more effective on their own behalf – helping to spur innovation, meet essential needs, build capacity and knowledge, and drive progress within and across rare diseases. We serve the more than 400 million people around the globe and nearly one in 10 Americans affected by rare diseases. If you or someone you love has a rare disease or are searching for a diagnosis, contact Global Genes at 949-248-RARE, or visit our resource hub.

Contacts

Laura Vinci
Finn Partners
402-499-8203
laura.vinci@finnpartners.com

Global Genes


Release Versions

Contacts

Laura Vinci
Finn Partners
402-499-8203
laura.vinci@finnpartners.com

More News From Global Genes

In Partnership with Global Genes, Congenital Hyperinsulinism International Hosts Inaugural Family Meet-Up

ALISO VIEJO, Calif.--(BUSINESS WIRE)--Global Genes, a leading patient advocacy organization, and Congenital Hyperinsulinism International (CHI), a foremost nonprofit dedicated to improving the lives of children and adults living with congenital hyperinsulinism (HI), today announced the inaugural CHI Family Meet-Up. The one-day event aims to provide the opportunity for those in the community and their families to connect, share their stories, and to learn about new findings from the Hyperinsulin...

In Partnership with Global Genes, Youngtimers Hosts Inaugural Leadership Summit

ALISO VIEJO, Calif.--(BUSINESS WIRE)--Global Genes, a leading patient advocacy organization, and Youngtimers, the only US nonprofit organization dedicated to providing education, support, resources for the early onset familial Alzheimer’s disease (EOFAD) community today announced the inaugural Youngtimers Leadership Summit. The four-day event aims to gather key stakeholders to facilitate dialogue around the gaps in the field and how to prioritize the patient perspective, as well as the future o...

Two Leading Rare Disease Organizations Join Forces to Enable and Accelerate Patient-Led Engagement and Advance Research

ALISO VIEJO, Calif.--(BUSINESS WIRE)--Global Genes and RARE-X, leaders in rare disease patient advocacy and capacity building, today announced that their respective boards of directors have signed a definitive agreement to combine the two organizations. This merger will enable the combined organization to provide the next generation of rare disease advocates the tools and resources they need to accelerate their drive for treatments. “This patient-focused, and science-driven partnership will cha...
Back to Newsroom