IFAA will be attending the conference as well as co-hosting an Exhibitor Booth registered under Lupus and Allied Diseases Association (LADA) IFAA partner in the Ethics of Step Therapy project aimed at modernizing the outdated protocol.  LADA President and CEO, Kathleen Arntsen, will be sitting on a panel discussion on biosimilars, in which she will mention the ethics project.

Members of Congress hear directly from constituents affected by rare disease about the need to advance the 21st Century Cures Act as well as other legislative priorities for the rare community.  IFAA was proud to send one of our Representatives to attend on our behalf.  

From Left: Kathleen Arntsen, President & CEO of Lupus & Allied Diseases Association (LADA); Former Congressman, Patrick Kennedy; Tiffany Westrich-Robertson, CEO of IFAA

IFAA Attends BIO Patient and Health Advocacy Summit

The largest awareness and resource sharing event for those affected by autoimmune and autoinflammatory diseases with arthritis as a major component is on it's way to the virtual track!  #WAAD17, hosted in the form of a car race around the world - with your favorite nonprofits as the race teams hosted the 5th annual event on May 19th-21st.  Learn more

BIO's Annual NJ Annual Dinner Meeting & Innovation Celebration

East Brunswick, NJ

The kickoff event of the year for the life sciences industry, BioNJ’s 23rd Annual Gateway Gala, Dinner Meeting & Innovation Celebration is scheduled for February 4, 2016 at the Hilton East Brunswick. Saluting New Jersey’s medical innovation, the inspirational evening will include a Keynote by the Honorable Patrick Kennedy, the presentation of the ninth annual Dr. Sol J. Barer Award for Vision, Innovation and Leadership to Clive Meanwell, M.D., Ph.D., Founder and CEO of The Medicines Company and the much anticipated Innovator Awards honoring companies with a footprint in New Jersey that have received a U.S. Food and Drug Administration approval in 2015.

PhRMA, along with its co-hosts (including IFAA), is pleased to honor individuals and organizations with the 2016 Research & Hope Awards, which will take place on September 13 in Washington DC. This year’s program will celebrate the progress and promise of Autoimmune Research & Care.

IFAA was honored to be selected as one of the grant awarded recipients to attend this forward-thinking event that brings together voluntary health organizations, the biotechnology industry, and other stakeholders for two days of robust programming to discuss timely policy issues and share best practices. The Summit also provides invaluable networking opportunities to advance partnership among stakeholders in the healthcare ecosystem.

Step Therapy & You

June 28th,  Sacramento CA

From Molecule to Miracle- An Overview of the Drug Discovery and Development Process

Honolulu, HI

Five  (of 12 RA patient panelists) selected as Patient Advisors in clinical trial development were chosen from our IFAA team.  The group, led by Arthritis Consumer Experts/Joint Health's CEO Cheryl Koehn, will convene in Dallas, TX to work with pharmaceutical representatives to ensure research design meets criteria best suited for the patient community.  

IFAA CEO joined other policy experts from the Arthritis Foundation, Applied Pharmacy Solutions, and Assemblymember Adrin Nazarian to lead a panel for health care providers and patients which will explore how step therapy policies keep beneficiaries from getting medications their doctors prescribe and add barriers to patient access to care.  IFAA specifically discussed the ethics of step therapy investigation (led in 2015), which demonstrates how payers cite research to justify cost. 

upcoming events

Local Hawaii resident and IFAA Representative, Betsy Brown, attended an event ith Hawaii policymakers, regulators, patient advocates, business leaders, academic researchers and health care providers to have fact-based discussions around the cost and value proposition of innovative medicines and the challenging process of drug discovery, development and approval.

PACT: Patient Advocacy, Collaboration and Translation

Chicago, IL

Research and Hope Awards

September 16th, Washington D.C.

Speakers during the day-long event about biosimilar safety emphasized the need for naming, labeling and approval processes that give physicians enough information to gauge a biosimilar’s suitability for a patient – and to monitor that patient’s response.  After attending this event IFAA met with BIO representatives from around the country as they prepared for Capitol Hill visits the following day.

2016 BIO International Convention 

June 6-9th, San Francisco CA

2nd Annual Patient Centric Clinical Research: Engagement & Innovation Conference

March 27th-28th, 2017, Alexandria VA 

Defining Patient Centricity Across Patient, Industry & Stakeholder Perspectives, Integrating the Patient’s Voice into Clinical Research to Streamline Timely Trials from Initial Development to Subject Recruitment & Retention, all while Optimizing Patient’s Engagement through the use of Technology & Social Media

BIO D.C. Fly In & AfPA Biosimilars Conference

Washington, D.C.

Washington D.C.

Tiffany Westrich-Robertson, CEO with Liz Helms, California Chronic Care Coalition

World AUTOimmune/AUTOinflammatory Arthritis Day 2017

May 19th-21st, ONLINE

The 4th Annual Patients as Partners 

March 2nd - 3rd, 2017, Philadelphia, PA

Patients in Partners is the only conference putting the patient voice on the same level as industry and government in finding solutions to engage and empower patients in the clinical trial process.  IFAA was a  Supporting Partner for the event so our logo was featured in advertising and take away materials at the event.  

Drug Development Clinical Trial Patient Advisory Panel

June 22nd, Dallas TX

past events (2016)

BIO Illinois is establishing a Patient Center, that will provide programming around advocacy training, curriculum development and common best practices to build capacity among patient-centered organizations.  In time the Patient Center will become a one stop location providing common office amenities while connecting these patient organizations to the stakeholders crucial to their mission.  The group, in which IFAA will become a part of, is convening in Chicago, IL March 19th-21st.

Recent events

Rare Disease Legislative Advocates Legislative Conference

June 30th, Chicago IL

IFAA recently started our blog, Systemically Connected, recently solely so we could begin to bring YOU - our fellow patients - "to the table", sharing our experiences with the community. Those participating in the panel will be hosting Facebook Live videos about this experience and asking the audience questions, so patients all over the world can also have a voice in future clinical trial development.

We aren't speaking for the patient. We ARE the patient.