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.

 

Brigham & Womens Hospital’s Pituitary Day 2014

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In partnership with the Brain Science Foundation, the Brigham and Women’s Hospital Pituitary Neuroendocrine Center is pleased to present

Pituitary Day 2014

Saturday, March 29, 2013
8 AM – 5 PM
Bornstein Amphitheater
at Brigham & Women’s Hospital
75 Francis Street
Boston, MA

This conference is intended to unite patients, caregivers, family and friends with leading clinicians, researchers, nurses, and other experts to discuss the latest in pituitary diagnosis and treatment. All patients, caregivers, family and friends are welcome!

For more information, please visit brainsciencefoundation.org or call Sarah Donnelly at 781-239-2903.

Seminar: Putting Patients First

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September 30, 2013 | 9:30 am – 2:30 pm
W Hotel, 515 15th Street, NW, Washington, DC

How do patients, providers, and payers know whether health information is credible, accurate, useful or appropriate?

Comparative effectiveness research (CER) has the potential to improve health outcomes by helping people make better-informed decisions. But how do we know that CER will generate information that is useful?

You can help us find the answers by joining us on September 30 for a conversation and symposium featuring a broad range of health care stakeholders—patients, providers, policymakers, payers, researchers, and those who fund research. We’ll focus on an effort led by the National Health Council to create a framework to guide the development of CER, evaluate its results, and assist in communicating the findings to the right audiences.

Be a part of the conversation—register today and add your voice to our efforts to make CER useful. Tweet about it using #useCER.

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