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Showing posts with label patient organizations. Show all posts
Showing posts with label patient organizations. Show all posts
Thursday, January 24, 2013
Special Opportunities for Patient Representatives - Deadline for application is Feb. 1
Tuesday, December 18, 2012
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
For more details, please visit our website or contact Donna.Mayer@diahome.org
Wednesday, October 3, 2012
Clinical Trail Endpoints: Last Chance to Save on a One-Day Interactive Workshop with Special Emphasis on Rare Diseases - Oct 25 WDC
Last Chance to Save on a One-Day
Interactive Workshop with Special Emphasis on Rare Diseases
Clinical Trial Endpoints: Methods and Practice in
Developing Measurements
October 25
University of California | Washington, DC
October 25
University of California | Washington, DC
This one-day interactive workshop with special emphasis on rare
diseases will provide a detailed examination of the process for developing,
validating, and implementing patient-focused clinical trial outcome measures
that will meet regulatory requirements for adequate and well-controlled
clinical trials, product approval, and labeling.
Session Topics:
• Attention to Measurement in Clinical Trials: Why it Matters
• Preparing the Groundwork for Clinically Meaningful Measurement: Getting the Content Right
• Generating an Instrument with an Interpretable Score
• Incorporating a Well-Defined and Reliable Measure into and Adequate and Well-Controlled Study
• Attention to Measurement in Clinical Trials: Why it Matters
• Preparing the Groundwork for Clinically Meaningful Measurement: Getting the Content Right
• Generating an Instrument with an Interpretable Score
• Incorporating a Well-Defined and Reliable Measure into and Adequate and Well-Controlled Study
Patients and Patient Organizations are
invited to attend the conference, at a reduced registration fee of $400, to
network with other stakeholders in the Rare Diseases Community. Submit a registration form by fax to
+1.215.442.6199.
Related Events:
US Conference on Rare Diseases & Orphan Products:
Shaping the Future NowOctober 22-24 | Washington, DC
Co-sponsored by NORD
DIA Adaptive Designs in Clinical Trials: Overcoming Persistent Barriers
November 29-30 | Washington, DC
Data Monitoring Committees: Best Practices and Future Directions
November 29-30 | Washington, DC
November 29-30 | Washington, DC
Featured Media Partner for DIA/NORD’s US Conference on Rare Diseases & Orphan
Products:
BioCentury Publications, Inc. is recognized as the leading
provider of value-added information, analysis and data essential to the
development and sustainability of life science ventures.
www.biocentury.comFriday, April 27, 2012
US Conference on Rare Diseases & Orphan Products: Shaping the Future Now
Oct 22 2012 8:00AM - Oct 24 2012 4:00PM
Capital Hilton 1001 16th Street NW, Washington, DC 20036-5794 USA
Capital Hilton 1001 16th Street NW, Washington, DC 20036-5794 USA
Co-sponsored with NORD (National Organization for Rare Disorders)
The Meeting For All Stakeholders in the Rare Disease/Orphan Product Community
This annual meeting where stakeholders - patients, patient organizations, researchers, drug and device companies, investors, thought leaders and government – meet to focus on rare diseases and orphan product research, development and access. At this year’s meeting, we seek to gain a common understanding of the current and emerging challenges, opportunities, and strategies for working together effectively to shape a better future for rare diseases and orphan drugs. It is important to remember none of us can get there alone. The 2011 meeting brought together more than 300 stakeholders, and this year’s event promises even more.
The format of the meeting includes both plenary and smaller group sessions. High-level plenary sessions will open a collaborative dialogue among leading researchers, company officials, investors, patient organizations and government leaders. Smaller group sessions are organized around three central themes: policy, research and regulation and special challenges. These sessions are intended to promote advancements in science, care and other considerations that will address the needs of the 30 million Americans with rare diseases. Topics include the current and emerging drug development environment, reenactment of the Prescription Drug and Medical Device User Fee Act, an update on NIH’s new National Center Advancing Translational Science, and many others.
Patient Organizations/Patients are invited to attend the US Conference on Rare Diseases and Orphan Products at a reduced registration fee of $400.
Please submit a registration form by fax to 215.442.6199
Questions: Contact Carrie Dunn at the DIA office by telephone 215.442.6181 or email Carrie.Dunn@diahome.org
Who Should Attend
- Researchers from academia and drug and device companies
- Patient organizations and those interested in creating one
- Senior managers from drug and device companies interested in rare diseases
- Investors focused on the future of orphan product development
- Policy experts who are concerned about federal or state policies that affect patients with rare diseases
- Providers of services to the rare disease community, including insurance providers and health care professionals
- Government officials responsible for rare disease research and orphan product oversight
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