Your voice: Be a part of the first FPIES Global Registry!
A message from Joy Meyer, Co-Director of The FPIES Foundation
You are more accustomed to hearing from The Foundation as a whole rather than me as an
individual voice. I am the Co-Director
of The FPIES Foundation. I am one of the
moms who founded this Foundation inspired from this incredible online community
of families affected by FPIES. It didn't take long after I joined the online
support groups (just weeks before my own son was diagnosed with FPIES, in the
spring of 2010) for me to see the dire need for these voices to be heard, to be
collected in a reliable, medically responsible ‘home’. The voices offering resources, sharing tools,
providing support, and empowerment to one another. And, most importantly, the
voice of our children, and what having this allergy meant to their development,
to their ‘relationship with food’, their quality of life living everyday with a
rare and often misunderstood diagnosis.
Being in the
medical field myself, I not only saw that the child’s voices needed to be heard
but that the voices from ‘other side of the door’ as well; the voices of the
very medical providers caring for our children.
To help their patients,
practitioners want to provide the best care but not knowing enough about FPIES
or where to turn to learn more about this little known allergy, can be as frustrating
for a provider as the families living with it looking for answers to best
treatments and management.
We saw the
necessity to build a strong foundation for these voices to be heard. We knew we would not only need a non-profit
foundation with a medical advisory board of health professionals compassionate
and knowledgeable in FPIES to provide medical advisement, we would need the voices
of the families to be strong, to be collaborative in the research and best
practice guidelines of this often misunderstood diagnosis. We recognize
the importance of bringing awareness to the diagnosis while building a growing,
solid, foundation of resources, tools and support for living with FPIES today;
all while working towards the novel, and continued, research that we know this
diagnosis that still perplexes many, needs.
We also know
that for recommendations to be built on evidence-based medicine (medicine that
looks at several studies and repeated research before drawing conclusions for
recommendations and protocols), it will be necessary for good quality research
to be presented by several researchers of various facilities. This will help to
assure that the widest range of symptoms are addressed and the best
evidence-based recommendations can be developed for improved management of this
allergic syndrome in the future.
From our
inception, we established an ongoing relationship with REGID (Registry for Eosinophilic GastroIntestinal Disorders)
to further educate ourselves on the requirements of a registry for FPIES. Recently, through our Foundation Alliance
with Global Genes, we have been introduced to the importance of our collective
voices to the rare diseases community, globally, in the National
Institutes of Health Global Rare Disease Registry. We are excited to introduce FPIES to be among those
collective voices for rare disorders.
Your voice,
the voice of your children and your family, will facilitate the evidence
gathering that is a vital piece to research. Several families have expressed my same
thoughts over the years, “…if only a
researcher could read some of what families share, and the patterns parents see
on the support group pages…” We have
always recognized that a vital place for evidence gathering begins in
the community, from the families living with this diagnosis.
So, how do we connect
families with researchers? How do we
help providers help families? How do we
get the voices of all the various concerns, multiple symptoms, and daily
struggles from the support groups to the researchers? A
patient registry! In partnership with Patient Crossroads CONNECT program, a
program from the National Institutes of Health Global Rare
Disease Registry we are honored to release our latest initiative: The FPIES
Foundation Global Patient Registry.
I am just one
voice in this community--- your collective voices ARE the Foundation. Each voice--
your voice!!-- is crucial for FPIES studies today, to guide new research for
tomorrow. The symptoms and unanswered questions of our children's experiences with
FPIES will be heard, recognized and researched further to develop protocols for
future treatments and new developments in management and care of our children
today. It all starts with ONE-- take a moment and add your child's voice.
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| Connect to FPIES Global Registry |
Registered families receive notifications when new surveys are posted.
The FPIES Global Patient Registry
- This registry is operated on the Patient Crossroads CONNECT platform and adheres to the Patient Crossroads privacy policy and terms of use.
- For questions regarding the registry’s privacy policy, terms of use, and/or any other questions regarding the FPIES Global Patient Registry, please email us: contact@thefpiesfoundation.org.
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