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CARRA Newsletter - July 2020


You Won’t Want to Miss CARRA 2020

CARRA’s virtual update: CARRA 2020 is happening tomorrow at 2pmET!

  • Past President, Rob Fuhlbrigge, will review CARRA’s accomplishments and highlight exciting new programs!
  • New President, Emily von Scheven will speak to her vision for CARRA over the next few years.
  • Arthritis Foundation CEO Ann Palmer will highlight our aligned priorities.
  • Steering Committee Chairs will highlight their accomplishments and plans for the coming year.


Member Spotlight

CARRA Rare Diseases Committee Chair, Jay Mehta, was recently interviewed by The Rheumatologist for a Q&A series on treating pediatric patients in today’s environment. He discusses how his clinic has adapted to telehealth, the common questions and concerns his patients have and the challenges facing the field in the future.

Click the image to read the full article! 


Virtual JA Conference July 25-26

Since 1984, the Arthritis Foundation’s annual National Juvenile Arthritis Conference has been a place where kids, teens, young adults and their families (siblings included) come together to get better informed about juvenile arthritis (JA) and other rheumatic diseases, as well as share stories and exchange tips to make living with the condition easier. This year, the conference will be held virtually, offering a variety of online programming with sessions for parents/caregivers, young adults, teens, kids and siblings on July 25-26, 2020.

    

On Saturday (July 25, 2020) CARRA’s President, Emily von Scheven, will join Guy Eakin, SVP Scientific Strategy at the Arthritis Foundation to discuss how The Arthritis Foundation and CARRA are working together to conquer childhood arthritis. Learn how research is accelerating progress towards a cure and how patients and families are at the heart of this strategic partnership. For more information and to register, click here.


July is Juvenile Arthritis Awareness Month

Juvenile Arthritis Awareness Month shines a light on the disease and allows us to recognize arthritis as an insidious disease that makes life extra challenging for many people. The Arthritis Foundation is using social media to spread the word and make sure arthritis is not forgotten. Follow and share their posts using @ArthritisFoundaiton for Instagram and LinkedIn and @ArthritisFdn for Twitter. The Arthritis Foundation encourages people to use #WeLiveYes and/or #StrangerThanJA hastags when posting. 

JA Power Packs

The Arthritis Foundation’s JA Power Pack is a toolkit with useful information and tools to assist newly-diagnosed children and teens, as well as their parents. These resources were designed to give patients and their families the power to make living with JA easier. Knowing what to expect and how to deal with the diagnosis is the key to better living with JA. Please encourage your patients and families you serve to order a JA Power Pack in one of the following ways:

  • Call the Arthritis Foundation toll-free number, 1-800-283-7800 to place an order
  • Obtain an order form from their care provider and return to the Arthritis Foundation Office printed on the form
  • Complete an updated order form during their clinic visit so that you, their care provider can send to the Arthritis Foundation office
  • Call their local Arthritis Foundation office and order over the phone Health Care Providers can request a tear-off pad of JA Power Pack order forms by contacting the Arthritis Foundation local office in your area

Important Deadlines and Updates

  • July 24: CARRA 2020: Virtual Update
  • August 3: Application to become a CARRA Registry Site Deadline
  • August 12: PReS Late-breaking Abstracts for 2020 PReS E-congress Deadline
  • August 15: 2020 Fall Grant Cycle Data Sample Share Committee (DSSC) Requests Deadline  
  • September 1: Letter of Intent (LOI) for CARRA-Arthritis Foundation Large Grants Due
  • October 1: Applications for CARRA-Arthritis Foundation Small and Large Grants Due

If you have a story to share about yourself or another CARRA member, please reach out to Anna Tietgen, CARRA Communications Manager at [email protected]