juvenile idiopathic research patient-focused meeting

Powerful Testimony at the 2018 JIA Patient-Focused Drug Development Meeting

Hundreds of patients and their families, FDA staff, industry leaders, and researchers convened in Washington, D.C. to participate in the externally-led JIA Patient-Focused Drug Development (PFDD) meeting on August 2, 2018. The meeting served as a kickoff event to the 4-day Arthritis Foundation JA Conference East. Juvenile idiopathic arthritis (JIA) is the most common type of juvenile arthritis (JA). In many children, it’s a life-long illness with a high risk of disease and treatment-related morbidity. There is no cure, and treatments for children are limited.

This meeting, which is part of our strategy to help find a cure for this serious disease, provided an opportunity for patients, patient advocates, and caretakers to talk about the symptoms and issues that matter most to them. JIA parents and their families shared information about the impact of JIA on daily life, the symptoms that are most challenging, experiences with currently available treatments and the need for new and different treatments.

JIA patients and their families were invited to attend in-person and via a live webcast. They shared their experiences by responding to a live poll and discussion questions. Three patients and nine parent panelists told stories about how JIA impacts their daily lives and discussed the wide range of treatments they have tried.

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2018 juvenile arthritis conference

From Washington State to Washington DC, the 2018 National Juvenile Arthritis Conference Welcomed Over 1,800 Participants

Each summer as school lets out and the weather starts to get warmer, there’s an excitement in the air felt all the way from Long Beach, California to the shores of Long Island, New York. There are always good reasons to be excited for some time off, but for many children, teens, young adults and their families affected by juvenile arthritis and related rheumatic diseases – the Arthritis Foundation’s National Juvenile Arthritis Conference has become the summer event to look forward to.

Over two long weekends in late June and early August, more than 1,800 attendees made their way to Seattle, Washington and Washington, DC to take part the 2018 JA Conference. As done in previous years, the Arthritis Foundation hosted two JA Conference locations to serve even more kids, families and young adults affected by childhood rheumatic diseases across the country, while also welcoming home returning veteran families.

In both cities, more than half of conference participants were first time attendees to the JA Conference, experiencing everything the four-day conference had to offer. Kids and teens were treated to their own specialized programming including peer-led activities, educational sessions and fun social happenings. At the same time, parents choose their own breakout sessions throughout the day – from disease-specific sessions hosted by top doctors and health care experts to topics such as educational rights in schools and transitioning from adolescent to adult medicine. This year, we also live-streamed two of our most popular sessions for those that were not able to join us in person.

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2018 juvenile arthritis conference

JA Conference Washington, DC – Kickoff

Superheroes Seen in Washington DC – the 2018 National Juvenile Arthritis Conference Begins Today!

Nearly 900 superheroes – kids, teens, young adults and their families – from across the country, have been seen banding together in Washington DC!

DC serves as the second location of the Arthritis Foundation’s signature National Juvenile Arthritis (JA) Conference. The JA Conference is a unique opportunity for families, kids, teens and young adults affected by JA and other rheumatic diseases to connect with others and spend the weekend networking, learning, sharing tips and forming friendships.

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Your Disease, Your Voice

Join us at the externally-led JIA Patient-Focused Drug Development meeting

We are hosting, along with our partner, the Childhood Arthritis and Rheumatology Research Alliance (CARRA), the Juvenile Idiopathic Arthritis Patient-Focused Drug Development (PFDD) meeting. This meeting, driven by our patients and caregivers, will provide the U.S. Food and Drug Administration (FDA) and industry personnel with input directly from you on how this disease affects your life, your experiences with current treatments, and the need for newer and better treatments.

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juvenile arthritis awareness 2018

Strength Comes in Numbers This Juvenile Arthritis Awareness Month

On June 28th, friends and families from all over the United States flocked to Bellevue, Washington, to connect, play and learn at the 2018 National Juvenile Arthritis Conference. With a turnout of over 1,000 people, the event began with a bang and was a massive success!

Now that the Conference has wound down, it is officially July, which is Juvenile Arthritis Awareness Month! And the Arthritis Foundation wants YOU to join the fight!

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2018 juvenile arthritis conference

Calling All Superheroes! The 2018 National Juvenile Arthritis Conference Begins Today!

Today, approximately 1,000 superheroes – kids, teens, young adults and their families – from across the country, have answered the call and have made their way to Bellevue, Washington.

Bellevue – a city located across Lake Washington from Seattle – is the first location of the Arthritis Foundation’s signature National Juvenile Arthritis (JA) Conference. The JA Conference is a unique opportunity to connect families, kids, teens and young adults affected by JA and other rheumatic diseases who spend the weekend networking, learning, sharing tips and forming connections that can last a lifetime.

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carra registry

Funding Juvenile Research Coordinators Across the County

The Arthritis Foundation is funding a new program to help support the Childhood Arthritis and Rheumatology Research Alliance (CARRA) and the CARRA Registry (registry). Eight sites were selected to receive funding to support the salary of a dedicated registry research coordinator for one year. Until now, some sites have been short-handed for this important research position.

Researchers collect information through studies on many pediatric patients with rheumatic diseases over time and store it in the registry.  Research coordinators play a critical role in making sure research studies run smoothly. Those supported by this program will:

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carra treatment plans

A New Way to Compare How Different Treatments Work for Patients with Pediatric Rheumatic Diseases

Every family whose child receives a diagnosis of a rheumatic disease (such as juvenile idiopathic arthritis (JIA), lupus, dermatomyositis and scleroderma) wants the best treatment and care. The doctors who treat your child also want to provide the best treatment and care for their patients.  Over the past 20 years, new discoveries and medicines have greatly improved the lives of children with rheumatic diseases.  Many new treatment choices are good, but how can we know which medication will work the best for each child?  What if we can learn the answer to this question by simply collecting information on how usual care and treatment work for a lot of children with the same disease?

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2018 juvenile arthritis conference

Calling All Superheroes! 2018 National Juvenile Arthritis Conference Registration is Now Open!

Leaping tall buildings may not be what we actually do but overcoming the daily challenges of juvenile arthritis takes a SUPER kid. By learning how to overcome obstacles and connecting with others, families use their super powers to fight arthritis.

Each day over 300,000 children, teens, young adults and their families deal with the daily pain of juvenile arthritis and related childhood rheumatic diseases. The Arthritis Foundation is here to empower our kids, teens, young adults and their families through support, education and forging connections. Together, we are determined to win the fight against JA. And together, we are unstoppable against arthritis.

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