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.
For more news on the FPIES Foundation Global Registry, see our press release: FPIES News & Events. Registered families receive notifications when new surveys are posted.
The FPIES Global Patient Registry
This post was written by the Executive Board of The FPIES Foundation.