Groundbreakers. Leaders. Advocates. The rare disease community is full of people who inspire us all through innovation, research, compassion and a relentless spirit to affect positive change.

Through the RARE Champion of Hope Awards, we honor and recognize true champions for rare disease. Help us identify the 2019 RARE Champions of Hope by nominating an individual, organization or collaboration in your community who has made an impact in advocacy, medical care and treatment, or science and technology. The deadline to nominate a RARE Champion of Hope is April 22.


Imagine a world that you want to exist and find the people that can help you get there. – Melissa Hogan, 2018 RARE Champion of Hope

Awardees will be honored at the RARE Champion of Hope Celebration on Friday, September 20, 2019, at the Sheraton San Diego Hotel & Marina. Tickets to the evening celebration are included with registration to the RARE Patient Advocacy Summit or may be purchased separately.

Nominees will be announced on May 1, 2019. Awardees will be announced on July 8, 2019.

RARE Champions in Advocacy

RARE Champions in Advocacy recognizes individuals in rare disease or within the general public who are advocates involved in a program, event or legislative effort to bring awareness to rare disease patients, their families or community. Nominees can be patients or champions for patients.

RARE Champions in Medical Care and Treatment

Honoring those medical and healthcare professionals who are recognized innovators in clinical care and treatment for rare disease, nominees for RARE Champions of Hope in Medical Care and Treatment display excellence in engaging with patients and families to optimize care and treatment, acts as leaders in medical care and are recognized experts for a specific patient population.

RARE Champions in Science and Technology

RARE Champions in Science and Technology recognizes researchers who are trailblazers and leaders in disease-specific research, drug development and scientific process. This person or group of people use an innovative approach to develop effective treatments to advance research for a specific rare disease community. Nominees should be conducting patient-driven research, research in academia, industry or within an advocacy organization.