Nominations Now Open for RareVoice Awards

rare-voice

Rare Disease Legislative Advocates is pleased to open nominations for the 5th Annual RareVoice Awards, a celebration to honor advocates who give rare disease patients a voice on Capitol Hill and in state government.

Wednesday, November 16, 2016
Arena Stage in Washington, DC

If you know of someone who has been a “Voice” for the rare disease community and should be honored for their work, please click here to submit your nomination.

RareVoice Award nominations are open to the public.  We encourage the community to nominate individuals and organizations who have gone above and beyond to become rare disease policy leaders and political advocates in their state and our nation. We have nominations open for the following categories: Congressional Staff, Patient Advocate or Patient Organization (at the state or federal level), and Government Agency Staff.

Deadline to submit nominations is July 31, 2016.

RARE Patient Advocacy Summit

 

I’m on my way to California today.  I was nominated for an award in the 2015 Tribute to Champions of Hope so I’ll be flying to Huntington Beach  for the 2-day  Fourth Annual RARE Patient Advocacy Summit. Follow along with LiveStream.

Saturday night will be the Gala.

Find my name on the list of nominees here: https://globalgenes.org/championsofhope/

One of the very best parts of this trip, though, is that I’m staying with a good friend from the Cushing’s Community.

WOOHOO

 

2015 Tribute to Champions of Hope Community Nominated Awards

global-champions

 

It’s that time of year again, when the rare disease community looks amongst themselves to identify and nominate agents of change, agents of innovation, and individuals who are working tirelessly on behalf of those affected by one of the 7,000 rare diseases impacting over 350 million people worldwide. Rare disease activists come from many different disciplines and are usually not recognized for the good work that they are doing. This is our opportunity as a community to come together to celebrate and honor those who are setting higher standards, making significant changes and fearlessly attacking challenges differently. Join Global Genes in recognizing these incredible individuals by nominating your Champion of Hope today.

All nominees will receive a special recognition gift, and those who win, will be asked to join us in Southern California in September at the Tribute To Champions of Hope Gala. Winners must be available Friday, September 25 and Saturday, September 26. 

 

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, and has become a leader in care 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 scientific process. This person or group works to advance research for a specific rare disease or is a key agent in the provision of tolls and 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 patient driven.

 

 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 for rare disease patients and their families. Nominees could include patients, patient advocates, 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 rare disease patients, their families or even themselves. 

 

RARE Champion – Collaborations in Advocacy

In order to advance efforts related to advocacy, we are finding that collaborations are critical and necessary to ensure success for rare disease. 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 ensure success.   Nominees for this award will have had 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.

 Nominations open March 15.

***Award Recipients are not based on number of submissions. All nominations will be reviewed and winner decided by the Global Genes Award Committee***

2015 Community Nominated Awards for the Tribute to Champions of Hope Gala will be open for submissions starting March 15th!

We are looking to YOU to nominate those individuals and organizations who are making a difference in your rare disease community.

Nominations close on April 30th.  Awards will be determined by nominees’ merit, not by number of submissions.

2015 Champions of Hope Nominations Open March 15!

global-champions

DO YOU KNOW A RARE CHAMPION OF HOPE WHO DESERVES PUBLIC RECOGNITION?
If so, we want hear from you!
2015 Community Nominated Awards for the Tribute to Champions of Hope Gala will be open for submissions starting March 15th! We are looking to YOU to nominate those individuals and organizations who are making a difference in your rare disease community.
The six nomination categories are:
·         RARE Champion in Medical Care & Treatment
·         RARE Champion in Science
·         RARE Champion in Advocacy​
·         RARE Champion in Teen Advocacy​
·         RARE Champion, Collaborations in Advocacy
·         RARE Champion, Collaborations in Science & Technology
For more details on each award, please click here.Nominations close on April 30th.  Awards will be determined by nominees’ merit, not by number of submissions.

The 2015 Tribute to Champions of Hope Gala will take place September 26th at the Hyatt Regency Resort & Spa in Huntington Beach, CA. Winners will also be expected to attend an afternoon ceremony on September 25th.

Please email any questions or comments to Amy Grover at amyg@globalgenes.org

 

GGP-Rare_logo-tagline-v4_final
Global Genes is a 501(c)(3) nonprofit organization advocating for rare disease globally.

 

%d bloggers like this: