PARE sessions underscore collaborative
strategies to diminish effects of RMDs
Patient participation in the EULAR Congress through the People with Arthritis and Rheumatism in Europe (PARE) programme
is a fundamental piece of the annual event. While new strategies
discussed during the congress offer
the potential for incremental progress
in the control of
and their effects
on daily life, the
patients, clinicians, and health
keeps the focus on what matters to those being
This year, the dialogue will be particularly relevant to young people
with RMDs. EULAR and the Paediatric Rheumatology European Society
(PReS) has created an integrated
agenda in collaboration with PARE, as
well as other relevant partners such
as the European Network of Children
with Arthritis (ENCA), to consider clinical issues in the young patient. This
is reflected in the PARE programme.
“There are two specific PARE sessions regarding young people with
RMDs,” reported Nele Caeyers, Chair
of the Standing Committee for PARE
and a delegate from Belgium. One of
these involves the transition to adult
care as young patients age. The other
“Over the years, there has
been growing attention to the
comorbidities that can adversely
affect outcomes in patients with
RMDs, and we know that these
often begin in children. The focus
on young patients is an important
opportunity to consider how intervening early might be important for
avoiding future complications,” Ms.
Caeyers said in an interview.
While progress in drug therapies
for RMDs is an important part of the
EULAR Congress this year – as it has
been every year – more emphasis
has been placed on nondrug strate-
gies to improve the quality of life of
patients with RMDs. This is reflected
in the PARE
ties to interact
with health pro-
what matters to
in RMDs involves
more than identifying the best drugs.
I think there has been a growing appreciation of the role of nutrition,
exercise, and other components of a
healthy lifestyle to improve well-being,” said Dieter Wiek, Vice President of EULAR representing PARE
and a delegate from Germany.
Whether the topic is new phar-macologic agents or the opportunity
for lifestyle modifications to improve
health, Mr. Wiek emphasised that
PARE sessions not only provide patients with access to evidence-based
information but also with a chance for
dialogue with clinician scientists.
“Patients attending the PARE programme at EULAR have the opportunity to be part of the discussion, ”
said Mr. Wiek, noting that this is fundamental to the three-pillar concept.
With health professionals and scientific societies representing two of the
pillars of EULAR, PARE specifically
includes patients into the vital collaboration with which priorities are set for
best practice in RMD management.
A debate scheduled for Friday afternoon is an example of the opportunity
for dialogue. A first-time event for the
PARE programme, the topic focuses
on what information patients expect
and need from their care provider. According to Ms. Caeyers, there is room
for discussion about whether, for example, all patients seek detailed information about the risk of rare adverse
events or expect genetic counselling
to evaluate the risk for their children to
develop a RMD.
“This will be a debate between scientists and patients regarding these
disclosures, and it provides those
with different views [a way] to understand other perspectives,” according
to Ms. Caeyers.
The debate is a new event, but it is
consistent with the goals and direction of PARE.
“The PARE programme at the
EULAR Congress this year is not substantially changed from that of recent
annual meetings, but there has been
an effort to increase audience participation. Many of the sessions have
been designed to be more interactive,” Mr. Wiek said.
PARE has its own agenda outside
of the EULAR Congress, meeting annually each year to discuss priorities
and develop strategies to improve
awareness of RMDs, access to care,
and quality of care. The 2019 annual PARE meeting was held in April
2019. Representatives from PARE
organisations across Europe gathered
in the Czech Republic to discuss a
variety of PARE initiatives, particularly
strategies to launch the 2019-2020
Time2Work phase of the “Don’t Delay, Connect Today” campaign. (See
article on page 20.) This is the latest twist in a campaign to introduce
more patients with RMDs to appropriate care.
Information on the Time2Work
phase of the “Don’t Delay, Connect
Today” campaign and other PARE initiatives will be available in the PARE
section of the EULAR Village in the
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