RARE Webinar! Learning More on Informed Consent

a doctor in his office showing an informed consent document and pointing with a pen where the patient must to sign

a doctor in his office showing an informed consent document and pointing with a pen where the patient must to sign

 

Wednesday, November 18, 2015 10:00 am
Pacific Standard Time (San Francisco, GMT-08:00)

 

Informed consent is intended to provide patients, clinical trial participants, and others undergoing medical procedures with the information they need to make a decision about whether to undergo a specific procedure or participate in research. The process of informed consent can sometimes be very legal in nature leading to lack of clarity and misunderstanding. This webinar will explain the informed consent process, why patients should pay attention to it, and why rare disease advocates may want to get involved in the process.

Rare disease organizations play a critical role in connecting patients with researchers and the informed consent document is critically important. It outlines who will have access to research data that results from a study. Understanding the informed consent process and how to engage will help patients receive the greatest benefit.

 

Panelists:
Megan O'Boyle bio photoMegan O’Boyle

Megan’s 15-year-old daughter, Shannon has Phelan-McDermid Syndrome (PMS), an ultra rare condition. This diagnosis includes autism, intellectual disabilities, epilepsy, ADHD, lymphedema, and other medical conditions.

For the past 5 years Megan has volunteered for the PMS Foundation’s Research Support Committee. She is the Principal Investigator for the Phelan-McDermid Syndrome Data Network (PMS_DN, PCORnet) and the Phelan-McDermid Syndrome International Registry (PMSIR). She directed the biosample collection at the 2012 PMSF Family Conference, creating a biorepository of over 30 DNA and fibroblast samples.

Megan is passionate about the importance of the patient’s voice in: research, drug development, clinical trial design, development of related legislation, and quality of life decisions. She advocates for data sharing, collaborating with other advocacy groups, sharing resources, a genetics-first approach and streamlining IRB practices and policies.

Megan and her family live in Arlington, VA.

 

john-wilbanksJohn Wilbanks

John Wilbanks is the Chief Commons Officer at Sage Bionetworks. Previously, Wilbanks worked as a legislative aide to Congressman Fortney “Pete” Stark, served as the first assistant director at Harvard’s Berkman Center for Internet & Society, founded and led to acquisition the bioinformatics company Incellico, Inc., and was executive director of the Science Commons project at Creative Commons. In February 2013, in response to a We the People petition that was spearheaded by Wilbanks and signed by 65,000 people, the U.S. government announced a plan to open up taxpayer-funded research data and make it available for free. Wilbanks holds a B.A. in philosophy from Tulane University and also studied modern letters at the Sorbonne.

Moderator:
Danny_LevineDaniel Levine, Founder & Principal, Levine Media Group

Daniel Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. Since 2011, he has served as the lead editor and writer of Burrill Media’s acclaimed annual book on the biotech industry and hosts The Burrill Report’s weekly podcast. His work has appeared in The New York Times, The Industry Standard, TheStreet.com, and other national publications.

 

Register here: https://globalgenes.org/webinarinformedconsent/

Pituitary Tumor Roundtable – Part One: A Focus on Diagnosis

Novartis is committed to supporting the pituitary community and continues to address the evolving needs of patients and caregivers.

In this video, a multidisciplinary panel discusses the diagnosis of acromegaly and Cushing’s disease.

For more information, visit: http://www.AboutAcromegaly.com and http://www.AboutCushings.com.

 

The Voices of Cushing’s Disease

The perspectives of individuals living with Cushing’s disease, their caregivers and advocates.

In creating this series, Novartis hoped to shine a spotlight on key factors involved in living with Cushing’s disease, including diagnosis, disease management and the importance of a strong support network.

The video series has been posted on the Novartis YouTube channel and can be viewed via the following links:

Rare Diseases, Loud Voices

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This year, Novartis is adopting the theme, “Rare Diseases, Loud Voices,” is offering content aimed at helping to amplify the voices of patients, families and caregivers impacted by rare diseases including Cushing’s disease. We are providing educational materials and resources highlighting several rare diseases thorough a Rare Disease Day specific microsite on our website (http://www.novartisoncology.com/world-rare-disease-day-2015.jsp) and across our social media channels, including Twitter, YouTube, Facebook, Pinterest, LinkedIn and Instagram.

On the microsite you will see we have also just launched two new resources – a whiteboard animation video (also posted to the Novartis YouTube page) and an infographic (also posted to the Novartis Pinterest page (https://www.pinterest.com/pin/384002305703664913/).

As part of our Twitter activity, several Cushing’s disease-specific tweets have been issued this week, featuring the hashtags #GetLoud, #RDD2015 and #raredisease, as well as complementary visual content to try to help tie Cushing’s disease to the larger RDD discussion.

World RARE Disease Day is only two weeks away!

world-rare-disease-2015

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.
WRDD template 6 version 3 2014       WRDD template 4 2014       WRDD template 5 2014 2       WRDD template 2 denim back 2014 1 2

 

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!      

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

 

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