Education and Awareness

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Promote Lupus Awareness Month and Celebrate World Lupus Day 

Join us in promoting Lupus Awareness Month during May and celebrating May 10th as World Lupus Day (WLD) by sharing our daily DID You Know 31 Days of Lupus Awareness Facts on social media and participating in our Hats On For Lupus Awareness While You Brew Up Your Inner Warrior Tea /Beverage Party. Remember to follow LADA on twitter (@ladainc) and facebook (Lupus and Allied Diseases Association, Inc.) and tag us on your posts. To learn more about the #HatsOn4Lupus Awareness event  click here.

In addition LADA is joining with the other members of the Lupus Agencies of New York State for the 14th Annual Lupus Awareness Month Recognition by the State Legislature.  Senator Joseph Griffo and Assemblymember Fred Thiele sponsor the joint legislative resolutions along with Senator Kevin Parker, Senator Diane Savino and Assemblywoman Crystal Peoples-Stokes. The groups have been collaborating each May to increase public awareness of Lupus and to garner support for education and research programs and access to healthcare issues. The Lupus Agencies of NY State extend sincere appreciation to our Legislative Resolution Sponsors and their staff for making the annual event possible. We also thank our dedicated lupus advocates for helping to promote the event each year.

Here is the 2021 Joint Resolution.  Click Here  

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LADA Participates in 2021 ACR Annual Meeting

LADA sponsored the Lupus Exhibit at the American College of Rheumatology (ACR) Convergence Today Virtual Scientific Meeting on November 6 - 10, 2021 to provide awareness and promote unity in the lupus community. The booth was manned by lupus patient advocates and staff representing lupus organizations from across the country. The meeting was attended by nearly 20,000 members of the Global Rheumatology Community and gives us the opportunity to share educational materials and resources with physicians and other healthcare professionals about lupus and the various organizations. We appreciate the participation of the various organizations:  Lupus and Allied Diseases Association, Lupus Chat, and Lupus Foundation of New England, and the efforts of our invaluable volunteers. We will continue to provide various opportunities for people with lupus to participate and make their voices heard in the healthcare, regulatory and public policy arenas and across the research continuum by supporting their attendance at key education, advocacy and scientific meetings.

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Lupus Awareness License Plates 

 

Lupus Awareness License Plates will only be available to order until September 1, 2022 from the NYS DMV and monies raised from the purchase of the special plates will go to the lupus research and education fund. The lupus awareness plate project was initiated by New York Senator Kevin Parker and Assemblymember Crystal Peoples-Stokes through their sponsored legislation that was then passed by the state legislature and became law. 

 

The goal of the awareness plates is to promote much-needed lupus awareness and education throughout the state, while monies received into the lupus research and education fund will be used to finance research to improve the quality of life for those living with lupus.

 

The awareness plate initiative is a result of the collective efforts of the Lupus Agencies of New York State which include:  Lupus Alliance of Upstate New York, Lupus and Allied Diseases Association, Lupus Foundation of America and Lupus Research Alliance and the countless New Yorkers who advocated for this bill and other lupus legislation.

 

The Lupus Agencies of New York State have been coming to the New York State Capitol Building for 17 years to promote lupus awareness during the month of May in the Senate and Assembly chambers.  The organizations extend gratitude to Senator Parker and Assemblymember Peoples-Stokes and the members of the Senate and Assembly for supporting and passing the legislation and Governor Cuomo for signing it into law.

 

The plates can be ordered through the DMV at (518) 402-4838 or through the following link

 

https://dmv.ny.gov/plates/lupus-awareness

 

Lupus Education Symposium Road Show

We are excited to announce that Lupus and Allied Diseases Association is in the process of taking our Enhancing Lives by Empowering the Lupus Community Education Symposium and Luncheon on the road again in 2022. We are partnering with the Lupus Foundation New England in Boston, Massachusetts; the Michigan Lupus Foundation in Detroit, Michigan; and the Lupus Society of Illinois in Chicago, Illinois this year.

The purpose of this initiative is to provide an educational program on Clinical Research Trials and Participation, Patient Empowerment, an Overview of Innovative Therapies, Treatment Access Challenges, and Tools for Survival when Dealing with Chronic Disease. A list of regional lupus clinical trial opportunities, patient empowerment and advocacy resource materials and a list of current healthcare access efforts are available for distribution. We chose to hold our event in three areas in the United States where there is a need for greater knowledge of the topics being presented.

The program is open to people with lupus and other autoimmune conditions, their loved ones, care partners, medical students, patient advocacy leaders, sponsors, and others interested in the topics. Each symposium will include an interactive word cloud representative of the attendees’ reactions to the education program. The event and luncheon are FREE but all attendees must register to attend.

To learn more about the individual programs read the information below. To register please visit our Education Symposium Road Show page.

We would like to recognize and thank our sponsors for their generous support.

Platinum Luncheon Sponsor
Aurinia Pharmaceuticals

Biogen and UCB, Inc.
GlaxoSmithKline
 
Gold Program Sponsor
AbbVie
AstraZeneca 
Bristol-Myers Squibb
Equillium, Inc.

Horizon Therapeutics
Janssen

Mallinckrodt Pharmaceuticals


Events
 

Boston Lupus Education Symposium

Sunday, October 2, 2022

10 am to 2 pm EDT

Simmons University

Linda K. Paresky Conference Center

300 The Fenway

Boston, MA  02115

Boston Symposium Flyer

 

Detroit Lupus Education Symposium
Saturday, October 15, 2022
10 am to 2 pm EST
Wayne State University
St. Andrews Hall
431 E. Congress St.
Detroit, MI  48226                                                                                  


Detroit Symposium Flyer

 

 

Chicago Lupus Education Symposium

Saturday, October 29, 2022

10 am to 2 pm EST

Venue TBD

Chicago, IL  

Chicago Symposium Flyer

May 10th is World Lupus Day

Lupus and Allied Diseases Association is honored to be a member of the World Lupus Federation (WLF) participating in the 18th annual observance of World Lupus Day (WLD) on May 10, 2021 along with 250 lupus groups in 75 countries on six continents. 

 

A global health problem, lupus affects people of all nationalities, races, ethnicities, genders and ages. While lupus knows no boundaries, knowing all you can about lupus can help control its impact. 

 

Click here for more information about the effort and on the survey title for the results of the Global Survey on the Impact of the COVID-19 Pandemic on people with lupus and their views on vaccines.

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2019 Lupus Education Symposium Road Show

Lupus and Allied Diseases Association's Enhancing Lives by Empowering the Lupus Community Education Symposium and Luncheons held in Hawaii, California and Colorado in 2019 were well attended by people with lupus and their loved ones. The purpose of the initiative was to provide an educational program on Clinical Research Trials and Participation, Patient Empowerment, an Overview of Biological Drugs, Infusions, Treatment Access Challenges, and Tools for Survival when Dealing with Chronic Disease. A list of regional lupus clinical trial opportunities, patient empowerment and advocacy resource materials and a list of current healthcare access efforts are available for distribution. The program was FREE but people were required to register to attend.

All 3 events and were a tremendous success based on the input we received from attendee evaluations. The first program was held on Saturday, March 30, 2019 at the Ko’olau Ballrooms & Conference Center in Kaneohe, HI  and was hosted by Sjögren's Lupus Foundation of Hawaii (SLFH), and Lupus and Allied Diseases Association (LADA). The second program was held on Wednesday, April 3, 2019 at the San Francisco Marriott Fisherman’s Wharf in San Francisco, CA and was hosted by Looms for Lupus, Lupus and Allied Diseases Association (LADA), and More Than Lupus. The third was held on Saturday, October 5, 2019 at the Arapahoe Community College in Littleton, CO  and was hosted by Lupus and Allied Diseases Association and Lupus Foundation of Colorado.

 

Each symposium included an interactive word cloud representative of the attendees’ reactions to the education program. 

Hawaii Symposium

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 Hawaii Word Cloud

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Hawaii symposium attendees and speakers.

LADA volunteers Christine Von Raesfeld, Juana Mata, and Estela Mata with speakers Brian Nyquist, Kathleen Arntsen, David Arntsen and SLFH President Melaca Cannella.

San Francisco Symposium

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San Francisco Word Cloud

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Cristina Lanata, MD speaking on A Personalized Approach to Lupus Research at the San Francisco Symposium.

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Colorado Symposium

Symposium hosts Kelli Roseta and Christine Von Raesfeld from More than Lupus, Kathleen Arntsen from LADA, Estela Mata and Juana Mata from Looms for Lupus and David Arntsen from LADA.

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Denver Word Cloud

Symposium speakers Brian Nyquist from NICA, Kathleen and David Arntsen from LADA and Dr. Susan Boackle from the University of Colorado School of Medicine at the Denver Symposium.

We sincerely appreciate the generous support
of our Education Symposium Sponsors

 

HOPE IS ON THE HORIZON PROJECT SPONSOR

Amgen

GOLD PROGRAM SPONSORS

AbbVie

Aurinia Pharmaceuticals

Eli Lilly

Janssen / Johnson & Johnson Health Care Systems, Inc.


SILVER FRIEND SPONSOR

Horizon Pharma

BRONZE EXHIBIT SPONSORS

Amgen

Exagen Inc.


Thank you to our volunteers and anyone
who promoted the event for us.

 
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LADA Attends NICA Inaugural Meeting

 

LADA President & CEO Kathleen Arntsen and Patient Advocate Christine Von Raesfeld joined over 500 infusion community stakeholders at the inaugural National Infusion Center Association (NICA) conference at the JW Marriott in downtown Austin, Texas June 21-22, 2019 to network and discuss access and treatment issues.

 

As patient stakeholders, we spent two days with infusion experts from across the country to address the most pressing challenges in the infusion industry and discuss how to preserve and advance this important healthcare delivery channel.

 

Hosted by the National Infusion Center Association (NICA), the nation’s non-profit advocacy voice for office-based infusion centers, this conference was a unique opportunity to network and learn from clinicians, practice managers, advocates and other professionals who play a role in the in-office infusion industry.  NICA released a groundbreaking publication NICA Minimum Standards for In-Office Infusion at the meeting. 

 

LADA President & CEO Kathleen Arntsen also participated as a panelist in the ADVOCATING FOR ACCESS TO CARE session on June 21st with fellow panelists:  Madelaine Feldman, MD, Rheumatologist at The Rheumatology Group and President of the Coalition of State Rheumatology Organizations (CSRO), Adam Taliaferro, JD, State Advocacy and Alliance Development at Bristol-Myers Squibb and Moderator Brian Nyquist, MPh, Executive Director of NICA.

 

This panel discussion revolved around best practices in advocating for patient access to in-office infusion and was a meeting favorite.  Session Video

Both Kathleen and Christine also participated in a Treatment Adherence Summit Roundtable discussion held on June 23, 2019 in conjunction with the NICA Meeting by providing their unique patient perspectives on challenges faced by the patient community in adhering to treatment regimens.

We encourage anyone who is infused to join NICA's #ShareYourChair campaign to promote awareness of the infusion process throughout their social media networks.

   

NICA 2019

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Pictured above left to right:  LADA was the hotel keycard sponsor for NICA's Annual Meeting; LADA Representatives Christine Von Raesfeld and Kathleen Arntsen at the #ShareYourChair exhibit; and Advocating for Access to Care Session participants (back row) Moderator Brian Nyquist, and panelists Adam Taliaferro, (front row) Kathleen Arntsen and Dr. Madelaine Feldman. 

 

LADA Attends BIO Convention

 

LADA joined 80 other patient advocacy organizations at the 2019 BIO International Convention hosted by the Biotechnology Innovation Organization (BIO) June 3-6, 2019 in Philadelphia, Pennsylvania. Over 16,000 people from around the world attended the conference at the Philadelphia Convention Center. It was the 5th year in a row that LADA was invited to participate in the conference and have a display in the Patient Advocacy Pavilion. We are thrilled to partner with BIO to advance innovation in life sciences and sound health care policies and are honored to be a member of New York BIO and BIO NJ.

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Pictured above are LADA Advocates David Arntsen, Kathleen Arntsen, Christine Von Raesfeld, Jeffrey Anders and Spandan Chakrabarti attending the BIO International Convention in Philadelphia. Pictured right are the advocates in the Rare Disease Photo Booth promoting rare disease awareness.  

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