2015 Tribute to Champions of Hope Community Nominated Awards

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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!

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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

 

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Global Genes is a 501(c)(3) nonprofit organization advocating for rare disease globally.

 

World RARE Disease Day is only two weeks away!

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World Rare Disease Day is an annual observance to raise awareness for rare diseases, and improve access to treatments and medical representation for individuals with rare diseases and their families. Created by European organization EURORDIS in 2008, this day is celebrated on the last day of February each year. The 8th annual World Rare Disease Day will be held on Saturday, February 28, 2015. On this day, various activities take place globally.

Looking for ways to get involved?

Global Genes™ holds a variety of awareness raising activities starting on World Rare Disease Day and continuing throughout the month of March (because RARE deserves more than a day). Please join patients, families, friends, caregivers, scientists, physicians, researchers, health care providers, policy experts and our team to raise RARE disease awareness. Here are a few ways you can get involved!

February/March Events for Rare Disease Awareness
•    Tweet Chat in Partnership with WEGO Health – Focusing on community events and facts & stats surrounding World Rare Disease Day. Thursday, February 19 at 2PM EST, participants can log on to Twitter and follow hashtags #RARETalk and #hachat to share ideas and win Global Genes & Wego Health swag bags, Walgreens gift cards, and more!

•    Global Genes 1st Annual Denim Dash Virtual 5k Run/Walk for Rare Disease (Virtual/Global) March 21-29, 2015 –The Denim Dash was created through collaborative efforts between Orphan Drug Solutions and Global Genes as their first annual virtual 5K event. This virtual 5k is designed to ensure that anyone, anywhere, can participate and show their support and raise awareness for patients, family and friends of the Rare Disease Community. The cost to register is $35 and includes Denim Dash t-shirt, race bib and Blue Denim Genes Ribbon. In order to receive a t-shirt, registration must be completed by 3/6/2015. Register here.

•    Give RARE (Online) – Give RARE, on March 3rd, is a single day for the world to GIVE to RARE disease! In partnership with Zenzaga, the Give RARE technology platform allows rare disease nonprofits to sign-up easily to create a donation page, raise funds for their cause and get access to win prize funds from sponsors. Grants will be given throughout the day. Register by February 15th and your nonprofit will have a chance to win a year’s worth of URS charity filings (worth $5000) from launch partners Charity ComplianceRegister your cause today!

•    ‘I Love Someone RARE & Beautiful.’ T-shirts in Partnership with the Gwendolyn Strong Foundation – Global Genes and the Gwendolyn Strong Foundation have partnered once again by bringing back the popular ‘I love someone RARE & beautiful.‘ tee in celebration of World Rare Disease Day. This is a LIMITED EDITION item, so get them while they last! They can be purchased here.

•    Wear That You Care campaign – All across the world people participate in supporting rare disease awareness and Wear That You Care by wearing the Blue Denim Genes Ribbon™ and their favorite pair of jeans on World Rare Disease Day. Wear That You Care campaigns take place locally—supporters often urge their offices, teams or other groups to wear jeans on a specific day and make a donation.

•    Social Media Awareness – Patients, advocates, and industry alike can grow social awareness by sharing photos, information, and events with Global Genes’ Facebook, Twitter, and Instagram. Where supporters can tag their photos or posts with hashtags #WearThatYouCare, #WRDD2015, #RAREadvocate, and #CareAboutRare to help draw attention to their content. Additionally, supporters can visit www.globalgenes.org/CareAboutRare and upload their photo into photo frames to use as social media profile images to further help spread awareness.
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Additional community events are located on the Global Genes website: 
http://globalgenes.org/2015-world-rare-disease-day-community-events/
Join the movement! Advocate for the over 350 million with a RARE disease today!      

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Global Genes is a 501(c)(3) nonprofit organization advocating for rare disease globally.

 

Rare Disease Day, 2015

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On February 27, 2015, the National Institutes of Health (NIH) will celebrate the eighth annual Rare Disease Day with a day-long celebration and recognition of the various rare diseases research activities supported by the NCATS’ Office of Rare Diseases Research, the NIH Clinical Center, and other NIH Institutes and Centers; the Food and Drug Administration’s (FDA) Office of Orphan Product Development; other Federal Government agencies; the National Organization for Rare Disorders; the Genetic Alliance; Global Genes; and Uplifting Athletes. Rare Disease Day at NIH will be held in the Masur Auditorium (Clinical Center, Building 10) from 8:30 a.m. to 5:00 p.m. Attendance is free and open to the public.

Rare Disease Day at NIH is appropriate for patients and patient advocates, health care providers, researchers, industry representatives, and government employees. We will have talks from academic and government scientists, industry representatives, and the lay community.

In addition to the various scheduled talks (see agenda), posters and exhibits from many groups relevant to the rare diseases research community will be displayed. In association with Global Genes, we again encourage all attendees to wear their favorite pair of jeans.

The Rare Disease Day 2015 event will also be webcast and Clinical Center tours will be available for in-person attendees.

Register Here.

 

2nd Annual Patient Advocacy Summit

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Come join us for our 2nd Annual “RARE Patient Advocacy Summit
to be held on Friday, September 20, 2013
at The Balboa Bay Club & Resort in Newport Beach, CA.

Register today!

Seating is limited for in-person participation.

Webcast registration available for those unable to attend in person.

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From Symptom to Cure:  The Journey of a Rare Disease Advocate ~ Equipping Patients to Make a Difference

Join Global Genes | RARE Project for a unique and interactive educational experience at our 2nd Annual Patient Advocacy Summit on Friday, September 20, 2013.   There is no charge to participate in this event.

A rare diagnosis changes everything. It crashes plans and dreams, knocks you off your feet, and requires a continual investment of time and money as you try to determine what should be your next step.  The purpose of the RARE Patient Advocacy Summit is to help patient ADVOCATES become successful ACTIVISTS and to provide the discussion, insights and tools to move down this advocacy path, equipped and prepared.

The summit will offer practical advice, case studies and networking opportunities as we learn from one another.  The goal is to have patient advocates walk away with a better understanding of the challenges they will face and where they can be most effective in helping advocate for their disease/disorder.

Attendees will:
  • Learn how to get started: obtain 501c3 status, write grants, leverage PR effectively and utilize social media to spread your message.

  • Collaboration: Understand how to successfully work with other rare disease stakeholders, patient advocates, the FDA and other government entities.

  • Learn the importance of patient registries, the different types of registries and how advocates can support them.

  • Explore the role of foundations and advocates related to scientific discovery and drug development.

  • Gain a broad understanding of the scientific process, including diagnostic and research methodologies and collaborations with academia and industry.

At the end of this day-long event, each participant will gain perspective on the complexities and questions that need to be considered in order to become effective advocates for the rare disease patients and help advance therapies in the rare diseases we represent.

Who Should Attend:
  • Rare disease patients, caregivers, family members and friends
  • Patient advocates

Whether you are new to this rare disease journey or an experienced traveler, an individual advocate or part of an existing rare disease organization, you will gain value from this event.

Register today!

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Hotel and Travel Information

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Sponsor Information

To become a sponsor or for more information, please contact Nicole Boice.  We look forward to seeing you at this year’s summit.

 View videos from our 2012 event.

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