DIA and the Rare Diseases Patient Community

Rare Disorders Without Borders Today marks the sixth international Rare Disease Day when hundreds of patient organizations from more than 60 countries participate in activities to raise awareness about the 6,000 rare diseases affecting more than 60 million people in Europe and the US alone. View the official Rare Disease Day video. View the official Rare Disease Day video. DIA and the Rare Diseases Patient Community DIA is working to ensure that the "voice of the patient' is heard globally in every facet of the discovery, development, and life cycle management of pharmaceuticals, biotechnology, medical devices, and related products. Visit the DIA Rare Disease Day site for upcoming events, educational materials, videos, and more. Important Dates: RESOURCES: DIA 2012: Orphan Drug Development How is DIA Raising Awareness? In 2012, DIA and NORD hosted the 2nd Annual US Conference on Rare Diseases and Orphan Products which brought together more than 300 stakeholders - patients, patient organizations, researchers, drug and device companies, investors, thought leaders and government – that met to discuss rare diseases and orphan product research, development and access to address the needs of the millions that suffer with rare diseases. Save the dates for 2013: October 7-9 in Bethesda, MD. How is DIA Helping? "My daughter suffers from a rare disease called Mastocytosis. We just found out last summer that I also have another version of the same disease called Mast Cell Activation Disorder. There is a medication that is available for us to take it is called Zaditen and it is only available in the UK and the DIA is actually helping us right now to get this medication into the United States so we can continue to use it.” - Kelli Foster, Patient Advocate, The Mastocytosis Society “And for the people that have one of these conditions, they can be life-altering, and in some cases, life-ending, and having that voice for those people and having a group that is willing to listen to us and wants to learn more about it, it’s so meaningful, it’s very hard to describe.” - Daniel Smith, National Dysautonomia Research Foundation Read More In the News As Rare Disease Day Approaches, Patient Advocates Celebrate 30 Years of Collaboration But Worry About Looming Budget Cuts Now THAT'S a Great Friend: Seven-Year-Old Boy Raises Over $300,000 to Help Find a Cure for His Classmate's Rare Genetic Condition Man with a Plan: Emil Kakkis Aims to Lure Big-Market Drugs Toward Rare Diseases Orphan Drugs – An Alternative to the declining Blockbuster Model? Join the Conversations on Rare Disease Day’s Social Media facebook.com/rarediseaseday ‘Like’ the RDD Facebook page, view our timeline and participate in the conversation on Rare Disease Day twitter.com/rarediseaseday Follow Rare Disease Day on Twitter @rarediseaseday and use the hashtag #raredisease youtube.com/rarediseaseday Watch the videos, comment and link to the many videos and upload your video to the Rare Disease Day channel via rarediseaseday.org flickr.com/photos/rarediseaseday Upload your photo on to the Rare Disease Day Photo Wall

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Patient Advocate Fellowship Program - DIA's Voice of the Patient - Application Deadline: February 1, 2013

Patient organizations are key stakeholders in helping DIA achieve its mission and vision. Through the Patient Advocate Fellowship Program, DIA is working to ensure that the "voice of the patient" is heard globally in every facet of the life cycle management of pharmaceuticals, medical devices, and related health care products. The DIA Patient Advocate Fellowship Program is designed to:

• Develop, strengthen, and support patient collaborations with policy makers, health professionals, industry representatives, and academia
• Increase the knowledge and understanding of patient groups about key issues central to patient-centered healthcare, biomedical research, and drug development
• Develop the capacity of patient groups to advocate for change
• Improve alliances between patient groups and other health care stakeholders
• Stimulate cooperation, promote dialogue, and share best practices

Apply for scholarship

20 patient representatives, chosen through a competitive process, will have opportunities to develop, strengthen, and support collaborations with policymakers, industry, academia, and health professionals by taking part in all facets of DIA 2013 49th Annual Meeting. DIA's Annual Meeting provides a forum for sharing best practices, stimulating cooperation, and facilitating a two-way dialogue across the entire global health care community.

For more details, please visit our website or contact Donna.Mayer@diahome.org

Americans Encouraged to Use American Diabetes Association Diabetes Risk Test, and Take Action for Their Health

press release

March 27, 2012, 10:06 a.m. EDT

Quest Diagnostics Supports 'Diabetes Alert Day'

Americans Encouraged to Use American Diabetes Association Diabetes Risk Test, and Take Action for Their Health

MADISON, N.J., March 27, 2012 /PRNewswire via COMTEX/ -- Quest Diagnostics /quotes/zigman/171542/quotes/nls/dgx DGX -0.66% , the world's leading provider of diagnostic testing, information and services, today joins the American Diabetes Association (ADA) in recognizing the 24th annual Diabetes Alert Day. This one-day "wake-up call" encourages the public to take the Diabetes Risk Test to learn if they are at risk for developing Type II diabetes, and join the ADA in the fight to Stop Diabetes®.

"We applaud and thank the American Diabetes Association for its leadership in encouraging people to know their risk for diabetes, and urge Americans to take a minute today to complete the Diabetes Risk Test," said Harvey W. Kaufman, M.D., Senior Corporate Medical Director, Quest Diagnostics, and co-author of a recent study published in the peer-reviewed online journal PLoS ONE, which found that twenty-eight percent of those found to be at high risk for diabetes through their employer's lab-based wellness program were unaware of the health concern. "Diabetes is a condition where knowledge is indeed power, where early detection can make a dramatic difference in patient empowerment and patient health."

For complete PR:
http://www.marketwatch.com/story/quest-diagnostics-supports-diabetes-alert-day-2012-03-27

Rare Disease, Orphan Conditions, Patient Advocacy sessions at Philly June DIA2012

DIA 2012 Collaborate to Innovate

48th Annual Meeting
June 24-28, 2012
Philadelphia, PA
Pennsylvania Convention Center

•Orphan Drug Development: Global Regulatory Challenges and Initiatives
This impactful session will focus on the critical need for developing orphan drugs, provide a review of global orphan drug development challenges, and offer information on various strategies designed to overcome these challenges.

•Challenges of Orphan Drugs in the US, EU, and Japan
This session addresses the current status and forthcoming activities related to orphan drugs in the US, EU, and Japan. Orphan drug development is obviously essential in these regions, and the provisions in place on drugs including rare diseases are often passed over. We will also address the unique market situation of orphan drugs in the US and development and commercialization strategies of orphan drugs in each region.

•Natural History Studies for Rare Diseases and Orphan Conditions
This session presents an overview of the design, conduct, and benefits of natural history studies of rare diseases and orphan conditions from varied perspectives of researchers, patients and a regulatory agency.

•Social Media 2.0: The Power of Online Rare Disease Communities to Connect and Engage ePatients
FORUM

•Drug Development Strategies for Integrating Academia, Non-governmental Organizations (NGOs), and Industry Based on Experience in Neglected and Infectious Diseases
This session will describe drug development strategies for integrating academia, non-governmental organizations (NGOs), and industry based on experience for the development of drugs for neglected and infectious diseases in the global health arena.

•Patient Advocacy in Medical Product Development: The Evolving Relationship Between FDA and Its Patient Stakeholders
This session will explore the role of patient advocates in FDA decision-making. FDA will describe its patient advocacy programs and the value they have added. A patient representative will discuss their interactions and experience with the agency.

•Rare Disease Clinical Research Consortia: Immediate and Rich Sources of Translational Research Data, Partnering Opportunities
Rare disease clinical research consortia offer a rich data source for translational research. Investigating diseases from porphyria to pediatric cholestasis, they present an array of collaborative opportunities for the pharmaceutical industry.

•Patient Advocacy and Your Next Generation of Research:  How Nonprofit Organizations Can Accelerate Product Development
This session provides insights into the rapidly emerging world of collaborations between pharma and patient advocacy organizations to accelerate basic and clinical research by leveraging the data and participation from patients.

•Understanding the Challenges of Conducting Studies for Orphan Indications and Rare Diseases
Conducting a research study for an orphan indication and/or rare disease involves unique considerations in addition to the more common challenges of clinical research. Key logistical and operational considerations will be discussed including sharing of specific, relevant examples from different therapeutic areas and clinical settings as well as strategies and techniques to navigate the challenges. The session will also address specific examples of materials, procedures and techniques developed and utilized for protocol/study design development, site identification and support, IRB/EC approval, subject recruitment and retention, subject support, and program timeline and budget management.
 
•Emerging Role of the Patient Voice on Drug Policy in Japan
Patients and lay people in Japan now form one of the major groups that support current drug development, safety, supply, and regulatory affairs. This session will discuss recent change and the significant effect of the patient voice on drug policy and the progress of the amendment of the Pharmaceutical Affairs Law.