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by Dana Symons

RHEUMATOID AWARENESS DAY GAINS MOMENTUM AND INTERNATIONAL RECOGNITION

January 28, 2014 in Events, Exciting, Press Release

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Patients Around the Globe Band Together to Increase Awareness for Rheumatoid Arthritis

January 27, 2014 – Thousands of patients are joining an international movement to increase awareness for the chronic illness known as rheumatoid arthritis, or rheumatoid disease, in anticipation of the second annual Rheumatoid Awareness Day on February 2.

Rheumatoid Awareness Day was established in 2013 by the Rheumatoid Patient Foundation (RPF) to address the lack of awareness for rheumatoid arthritis — often presumed to be a type of arthritis — and resulting inadequacies in disability accommodations, clinical care, healthcare costs and research funding.

This year’s awareness day is expected to have an even larger reach and greater impact. Patients in the U.S. and Canada have already worked within their localities to establish several official proclamations for the observance of Rheumatoid Awareness Day, and local support is being seen across Europe and in New Zealand. “It’s exciting to be contacted by patients, organizations, and even clinicians from around the world asking how they can participate,” says RPF President Kelly Young. Another positive indication that the day is gaining momentum is medical media reaching out. “We know that this is the beginning of something important – something permanent,” says Young; “to bring this invisible disease out of the shadows, driving much needed assistance and research.”

RPF is encouraging individuals and organizations to get involved in the 2014 Rheumatoid Awareness Day by joining the Facebook event created for the day; participating in an online chat on February 2, with Mayo Clinic rheumatologist Dr. John Davis; sharing awareness images and education resources; and creating their own awareness events. RPF is asking participants to share what rheumatoid awareness means to them and to show how they are celebrating awareness by posting photos and personal blogs.

Additionally, Crescendo Bioscience is providing a matching grant for donations to RPF, up to $15,000. Crescendo Bioscience provides quantitative molecular tests and disease information services in the field of rheumatology; it’s initial product is Vectra® DA, the multi-biomarker blood test for rheumatoid arthritis. More information about Rheumatoid Awareness Day and how to be involved can be found at http://rheum4us.org.

About Rheumatoid Arthritis
Rheumatoid arthritis is a progressive inflammatory disease causing damage to joint and organ tissues, resulting in severe pain, frequent disability, and increased mortality. For most patients, current treatments neither relieve all symptoms nor assure a healthy future. Remission is rare[1]. Rheumatoid disease affects about one percent of the world’s population, and Mayo Clinic says lifetime risk of the disease is 3.6 percent for women and 1.7 percent for men[2].

About the Rheumatoid Patient Foundation
RPF is a 501c(3) non-profit organization dedicated to improving the lives of people with rheumatoid diseases such as rheumatoid arthritis and juvenile arthritis. RPF was founded in 2011 to address a significant lack of disease education, comparatively low levels of research funding, and difficulty obtaining adequate treatment. RPF is committed to creating pathways to better clinical care and disease outcomes through education, awareness, and participation in patient-centered research. For more information, visit http://rheum4us.org or follow RPF on Facebook or Twitter.

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Contact:

Kelly Young
Kelly@rheum4us.org
PO Box 236251
Cocoa, FL 32923

[1] Prince, F et al. Arthritis Research and Therapy. Sustained rheumatoid arthritis remission is uncommon in clinical practice. http://arthritis-research.com/content/pdf/ar3785.pdf
[2] Mayo Clinic. 2011. Mayo Clinic Determines Lifetime Risk of Adult Rheumatoid Arthritis. http://www.ncbi.nlm.nih.gov/pubmed/21360492?dopt=Abstract

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by KatieB

SURVEY DATA CHALLENGE CONVENTIONAL THINKING OF RHEUMATOID ARTHRITIS AND REVEAL UNRECOGNIZED ASPECTS OF THE DISEASE

October 22, 2013 in Events, Press Release, RPF News

Rheumatoid Patient Foundation to Present Findings at the American College of Rheumatology 2013 Annual Meeting

October 22, 2013 -- The Rheumatoid Patient Foundation (RPF) announced today that it will be presenting two abstracts with compelling findings on the nature and assessment of rheumatoid disease at the 2013 American College of Rheumatology (ACR) / Association of Rheumatology Health Professionals (ARHP) Annual Scientific Meeting, to be held October 25-30 in San Diego, CA. The data, which was collected through large surveys of patients with rheumatoid disease, will be presented by RPF founder and president, Kelly Young, and abstract co-authors in two poster sessions.

Findings to be presented include data on disparities that exist between current medical literature and actual experiences of those living with rheumatoid disease – including the concept of “morning stiffness,” the relationship between swelling and joint damage, and factors that increase or decrease symptoms. Young notes, “An accurate view of patient experiences with the disease is critically important to improving clinical care and discovering better treatments. Our data show a variety of experiences with the disease, which emphasize the importance of clinicians engaging patients to learn about their condition.”

Additional data will be presented examining how the Health Assessment Questionnaire (HAQ) gauges fundamental aspects of rheumatoid disease, including the consequences of physical activity as seen in a real-world context. Young explains, “The HAQ is considered the gold standard in RA assessment, but the data show it may not measure essential aspects of disease impact.”

Details about each of the poster sessions can be found below.

Poster Title: Patient Survey Challenges Conventional Notions Regarding Symptoms and Experiences Of People Living With Rheumatoid Arthritis
Abstract: #2273
Presenter: Young, Kelly O'Neill BA
Co-Authors: Crowson, Cynthia S. MS; Symons, Dana M. BBA
Date: Tuesday, October 29, 2013
Presenter Available: 9:00 am - 11:00 am
Poster Available: 8:30 am - 4:00 pm
Location: Exhibit Hall B2-C-D

 

Poster Title: Patient Survey Regarding Utility Of The Health Assessment Questionnaire Reveals An Unrecognized Aspect Of Disease Activity In Rheumatoid Arthritis: Consequences Of Physical Activity
Abstract: #2272
Presenter: Young, Kelly O'Neill BA
Co-Authors: Symons, Dana M. BBA; Lumpe, Andrew T. PhD; Crowson, Cynthia S. MS
Date: Tuesday, October 29, 2013
Presenter Available: 9:00 am - 11:00 am
Poster Available: 8:30 am - 4:00 pm
Location: Exhibit Hall B2-C-D

 

About the Rheumatoid Patient Foundation
RPF is a 501c(3) non-profit organization dedicated to improving the lives of people with rheumatoid diseases such as rheumatoid arthritis and juvenile arthritis. RPF was founded in 2011 to address a significant lack of disease education, comparatively low levels of research funding, and difficulty obtaining adequate treatment. RPF is committed to creating pathways to better clinical care and disease outcomes through education, awareness, and participation in patient-centered research. For more information, visit http://rheum4us.org or follow RPF on Facebook or Twitter.

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by KatieB

FIRST-EVER RHEUMATOID ARTHRITIS DAY, FEB. 2, BRINGING THOUSANDS TOGETHER

January 31, 2013 in Press Release

FIRST-EVER RHEUMATOID ARTHRITIS DAY, FEB. 2, BRINGING THOUSANDS TOGETHER

Patients Uniting to Overcome Misconceptions; Crescendo Bioscience® to Match Donations to Rheumatoid Patient Foundation

January 31, 2013 – The first-ever Rheumatoid Awareness Day, to be celebrated on Saturday, has already brought thousands of patients together to begin the process of educating the public about rheumatoid arthritis. Almost 6,000 have signed up to recognize the day on the Facebook page for this event, with others preparing to host local events and writing officials requesting recognition of Rheumatoid Awareness Day.

In addition, Crescendo Bioscience®, Inc. is providing a matching grant for donations to the Rheumatoid Patient Foundation (RPF), the group that established Rheumatoid Awareness Day, up to $10,000. RPF encourages both patients and the public to join this first awareness day by donating with the link http://bit.ly/give2RPF. Crescendo Bioscience is a molecular diagnostics company that offers Vectra™ DA, a multi-biomarker blood test that measures disease activity in rheumatoid arthritis patients.

The stories posted on social media have underscored the impact of the disease; some have posted about the career they enjoyed before the disease or about having had the disease since childhood. James posted, “It's such a struggle on a daily basis for those of us with this disease, and to have those around us say, ‘I know how you feel, I've got a little arthritis pain in my finger or toe or wherever.’ This is so much more than just arthritis.”

One goal of this initiative is to overcome the misconception that rheumatoid disease is a form of arthritis. While the disease usually affects joints, the disease process is not the same as osteoarthritis. RPF founder Kelly Young points out, “Joint inflammation is a prominent symptom of this disease for most patients, but it’s a disservice to refer to it as merely a type of arthritis.” She explains, “Just today a patient posted about the severe effects of her rheumatoid lung disease saying her joints feel better than they have in years.”

Rheumatoid arthritis is a progressive inflammatory disease causing damage to joint and organ tissues, resulting in pain, frequent disability, and increased mortality. RPF gives a voice to millions of people with this disease which, despite the lack of awareness, is rather common; Mayo Clinic says lifetime risk of the disease is 3.6 percent for women and 1.7 percent for men.[1]

The Rheumatoid Patient Foundation established Rheumatoid Awareness Day as the second of February, drawing analogies between Groundhog Day and the crucial window of opportunity after disease onset for rheumatoid patients to get early diagnosis and treatment. And it falls during Heart Disease Awareness Month, highlighting the link between rheumatoid disease and heart disease. Rheumatoid patients have a higher incidence of stroke, atrial fibrillation, and silent heart attack. For more information on how to support Rheumatoid Awareness Day, visit http://rheum4us.org/rheumatoid-arthritis-awareness-day/.

About the Rheumatoid Patient Foundation

RPF is a 501c(3) non-profit organization dedicated to improving the lives of people with rheumatoid diseases such as rheumatoid arthritis and juvenile arthritis. RPF was founded in 2011 to address a significant lack of disease education, comparatively low levels of research funding, and difficulty obtaining adequate treatment. RPF is committed to creating pathways to better clinical care and disease outcomes through education, awareness, and participation in patient-centered research. For more information, visit http://rheum4us.org or follow RPF on Facebook or Twitter.

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[1] Mayo Clinic. 2011. Mayo Clinic Determines Lifetime Risk of Adult Rheumatoid Arthritis. http://www.mayoclinic.org/news2011-rst/6137.html?rss-feedid=1

 

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by KatieB

FIRST AWARENESS DAY FOR RHEUMATOID ARTHRITIS ESTABLISHED BY RHEUMATOID PATIENT FOUNDATION

January 22, 2013 in Events, Exciting, Press Release

Patients Increase Public Awareness of Underestimated Disease

Rheumatoid Arthritis Awareness Day - February 2

Rheumatoid Awareness Day

January 22, 2013 – Rheumatoid Patient Foundation (RPF) announces the establishment of Rheumatoid Awareness Day to be held each year on February 2, giving people with the chronic illness known as rheumatoid arthritis, or rheumatoid disease, a day of recognition. Because the disease is commonly presumed to be a type of arthritis, awareness is lacking, causing problems with disability accommodations, clinical care, healthcare reimbursement and research funding.

February 2 already boasts the observance of Groundhog Day, from which several analogies can be drawn to rheumatoid disease. “Compare disease onset to the moment the groundhog comes out of his hole to look for his shadow,” says Kelly Young, founder of the RPF. “It’s impossible to predict how aggressive the disease will be or whether treatments will be effective. The six weeks that the groundhog forecasts correspond to the short window of opportunity for people with rheumatoid disease to get early diagnosis and treatment, which has been shown to be a crucial component of positive outcome.”

Rheumatoid arthritis is a progressive inflammatory disease causing damage to joint and organ tissues, resulting in severe pain, frequent disability, and increased mortality. For most patients, current treatments neither relieve all symptoms nor assure a healthy future. Remission is rare[1]. Rheumatoid disease affects about one percent of the world’s population, with 1.6 to 2 million Americans currently diagnosed. Mayo Clinic says lifetime risk of the disease is 3.6 percent for women and 1.7 percent for men[2].

Rheumatoid Awareness Day comes at the start of Heart Disease Awareness month, underscoring a serious aspect of rheumatoid disease: heart involvement. Studies show that rheumatoid disease may affect the heart prior to diagnosis[3]. Rheumatoid patients have higher incidence of stroke and atrial fibrillation[4] in addition to the specific effects of the disease upon the heart itself[5]. A study conducted by Mayo Clinic[6] reported that rheumatoid arthritis patients were twice as likely to experience silent heart attacks and sudden cardiac deaths.

The Rheumatoid Patient Foundation will support the first annual Rheumatoid Awareness Day with a campaign aimed at raising awareness and educating about rheumatoid disease. RPF encourages both the rheumatoid patient community and the public to get involved by sharing educational resources, promoting awareness messages via social media, participating in a live online chat and a matching donation opportunity. For information on how to support Rheumatoid Awareness Day, visit http://rheum4us.org/rheumatoid-arthritis-awareness-day/.

Rheumatoid Patient Foundation

RPF is a 501c(3) non-profit organization dedicated to improving the lives of people with rheumatoid diseases such as rheumatoid arthritis and juvenile arthritis. RPF was founded in 2011 to address significant lack of disease education, comparatively low levels of research funding, and difficulty obtaining adequate treatment. RPF is committed to creating pathways to better clinical care and disease outcomes through education, awareness, and participation in patient-centered research. For more information, visit http://rheum4us.org or follow us on Facebook http://www.facebook.com/rheumatoidpatientfoundation or Twitter http://www.twitter.com/RheumPF.

###

Contact:

Kelly Young
Kelly@rheum4us.org
PO Box 236251
Cocoa, FL 32923

[1] Prince, F et al. Arthritis Research and Therapy. Sustained rheumatoid arthritis remission is uncommon in clinical practice. http://arthritis-research.com/content/pdf/ar3785.pdf

[2] Mayo Clinic. 2011. Mayo Clinic Determines Lifetime Risk of Adult Rheumatoid Arthritis. http://www.mayoclinic.org/news2011-rst/6137.html?rss-feedid=1

[3] Kerola, A et al. Annals of Rheumatic Diseases. 2012. Cardiovascular comorbidities antedating the diagnosis of rheumatoid arthritis. http://ard.bmj.com/content/early/2012/11/22/annrheumdis-2012-202398.abstract

[4] Jesper, L et al. British Medical Journal. Risk of atrial fibrillation and stroke in rheumatoid arthritis: Danish nationwide cohort study. http://www.bmj.com/content/344/bmj.e1257

[5] Young, K. 2011. Rheumatoid Arthritis Warrior. 20 Facts About Rheumatoid Heart Disease. http://rawarrior.com/20-facts-about-rheumatoid-heart-disease/

[6] Science Daily. 2005. Mayo Clinic Finds Rheumatoid Arthritis Patients At Higher Risk For Unrecognized Heart Disease And Cardiac Sudden Death. http://www.sciencedaily.com/releases/2005/02/050204121639.htm

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