Annually, the RARE Disease Community comes together to look amongst themselves to identify and nominate individuals who have become difference makers for those affected by one of the 7,000 rare diseases impacting over 350 million people worldwide. These individuals are true agents of change and agents of innovation, bringing new ideas to rare disease in an effort to truly impact patients lives.
The RARE Champion of Hope events were created to honor and recognize those true Champions for Rare Disease. This is a time when we stand together as a community to support those who inspire all of us to do more, to do better, and to help positively impact patients and their families around the globe.
Join Global Genes in nominating your Champion of Hope. Categories include; Medical Care and Treatment, Science, Advocacy, Teen Advocacy, Collaborations in Science and Collaborations in Advocacy.
All nominees will receive a special recognition gift, and those who win will be asked to join us in Southern California for our Tribute to Champions series of events being held on Friday, September 15th and Saturday, September 16th.
Nomination Categories
RARE Champion in Medical Care & Treatment
Nominations are being accepted for health care providers who are recognized innovators in clinical care and treatment for rare disease. This nominee engages with patients/families to optimize care and treatment, has become a leader in care and has become a recognized expert for the specific patient population. Special consideration will be given to those individuals who have created cutting edge programs and support well beyond the current standards of care.
RARE Champion in Science
Nominations are being accepted for researchers who are recognized innovators & leaders in disease-specific research, drug development, and the scientific process. This person or group works to advance research for a specific rare disease while using innovative approaches to developing and/or delivering more effective treatments for the rare disease community. Nominees should be conducting research in academia, industry, the clinic, within an advocacy organization or can be patient driven or patient-directed research.
RARE Champion in Advocacy
Nominations are being accepted for individuals either in rare disease or within the general public who have been involved in a program, event, legislative effort, or something else extraordinary to advocate and bring great awareness for rare disease patients and their families. Nominees have included patients, champions for patients, celebrity, legislators, professional/Olympic athletes, etc.
RARE Champion in Teen Advocacy
Nominations are being accepted for young adults that have been instrumental in advocating for a rare disease. We are looking for a patient or patient advocate who has been involved in a program, event, legislative effort, or something else extraordinary to advocate for and bring awareness to rare disease patients, their families or even themselves.
RARE Champion – Collaborations in Advocacy
In order to advance efforts in rare disease, we are finding that collaborations are critical and necessary to ensure success and forward movement. We are looking to honor organizations and individuals who have demonstrated a successful collaboration related to rare disease advocacy. This award should not include scientific collaborations, but rather should focus on collaborative programs and support initiatives, the development of collaborative resources and tools that create impact, collaboration around legislative efforts, collaborations around events, awareness efforts, etc. Submissions must include the names and contact information for all participating individuals or organizations.
RARE Champion – Collaborations in Science & Technology
In order to advance efforts related to rare disease research, we are finding collaborations are critical to ensuring success. Nominees for this award will have demonstrated success in advancing science for a disease or family of diseases by creating novel collaborations through science, driven by science collaborations set forth by advocacy organizations, or through a combination of both. Consideration will be given to new ideas working to drive systemic change within the science community through novel collaborations. Submissions must include names and contact information for all parties involved.
***Award Recipients are not based on the number of submissions. All nominations will be reviewed and winner decided by the Global Genes Award Committee***
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