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and Allied Diseases Association (LADA) IFAA partner in the Ethics of Step Therapy project aimed at modernizing the outdated protocol.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.
Tiffany Westrich-Robertson, CEO with Liz Helms, California Chronic Care Coalition
World AUTOimmune/AUTOinflammatory Arthritis Day 2017
May 19th-21st, ONLINE
American College of Rheumatology (ACR) Annual Scientific Meeting & D.C. Legislative Fly-In
International Still's Disease Foundation dissolves, IFAA was chosen to house resources
Due to leadership illness, IFAA has been honored to help the International Still's Disease Foundation (ISDF) manage their organization's website and social media accounts. Also, with the annual Still's Disease Awareness Day approaching, IFAA wanted to make sure the patient community is not left without their day to 'put the dragon to sleep. Learn more about the dissolution.
Tiffany Westrich-Robertson, CEO, will be participating in a panel discussion: Changing Behaviors and Perception to Foster Valuable Long-Term Partnerships Between Manufacturers and Advocacy Groups
IFAA is proud to have received 1 of only 6 invitations to non-European based nonprofits to attend the EULAR PARE Meeting in Brussels, Belgium. Meeting information will include: Capacity building and empowerment, working with schools and education providers to ensure young people with RMDs are supported, delivering campaigns to promote early diagnosis of pediatric and young adult RMDs; understanding the European policy landscape from an RMD perspective and how to influence policy to make a better world for people with RMDs.
In September 2017, four IFAA'ers (two original co-founders and two volunteer "Representatives") were chosen by the ACR to fly to Washington D.C. to advocate on behalf of rheumatic patients. In November, IFAA CEO and volunteer Representative attended the ACR Annual Scientific Meeting. There they met with several nonprofits and pharmaceutical companies about collaborating in 2018 and attended several sessions, including those on biosimilars safety and alternative therapies.
Lupus and Allied Diseases Association (LADA), the Lupus Foundation of America and the Lupus Research Alliance have joined together to host a groundbreaking initiative that will help provide the Food and Drug Administration (FDA) with perspective from our community on a number of important issues that affect treatment decisions. IFAA will be attending to help LADA, as an all-volunteer nonprofit who does not have the manpower of the other hosting organizations.
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.
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.
IFAA Co-Founder, Kelly Conway, will be a Panelist in the Keynote Patient Panel - "Voice of the Patient", which will discuss treatment access and adherence issues in our community and how we can work together with pharma to overcome these obstacles.
This annual conference unites stakeholders to discuss major policy issues that affect rheumatologist and the patient community. Few patient organizations are invited to attend; IFAA is proud to be one of them!
BIO's Annual NJ Annual Dinner Meeting & Innovation Celebration
East Brunswick, NJ
From Left: Kathleen Arntsen, President & CEO of Lupus & Allied Diseases Association (LADA); Former Congressman, Patrick Kennedy; Tiffany Westrich-Robertson, CEO of IFAA
IFAA is a proud media sponsor of the 5th Annual Patients as Partners conference, an event that unites stakeholders from patient groups and industry to discuss best practices for including the patient voice in research processes.
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
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.
Coalition of State Rheumatology Organizations (CSRO) 2017 State Society Advocacy Conference
September 8 – 9, Rosemont, IL
Specialty Network Design and Channel Optimization Summit
Establish an Optimized Specialty Network and Channel Strategy to Enhance Product Access to Specialty Therapies and Improve the Patient Journey
July 24 - 25th, Philadelphia PA
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.
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
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.
Rare Disease Legislative Advocates Legislative Conference
June 30th, Chicago IL
Biosimilars Stakeholder Workshop (BSW)
October 4, Washington D.C.
5th Annual World Congress Summit on Patient Advocacy
October 23rd, Arlington VA
BIO D.C. Fly In & AfPA Biosimilars Conference
Step Therapy & You
June 28th, Sacramento CA
Lupus Patient-Focused Drug Development (PFDD) Meeting
September 25, Hyattsville, Maryland
Patients as Partners, USA
March 2018, Philadelphia PA
EULAR PARE Meeting
February 2018, Brussels Belgium
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.
As the number of approved biosimilars in the marketplace increases, understanding the perspectives and needs of stakeholders is critical to ensure their successful uptake. The goal of the BSW is to create a better understanding of each stakeholder’s perspective, focusing on the needs of the patients and providers who will be affected by the emergence of biosimilars.
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