Sunday, August 31, 2014

The FPIES Foundation Celebrates Three Years!


The FPIES Foundation is excited to celebrate its third anniversary of empowering, educating and helping families around the world to navigate life with Food Protein-Induced Enterocolitis Syndrome (FPIES).

This past year was packed with numerous accomplishments, big and small. The FPIES Foundation achieved its goal of launching a first-of-its-kind FPIES Global Patient Registry. The registry is a ground-breaking opportunity to directly bring families affected by FPIES together with doctors and researchers interested in learning more about this rare allergy.


We are also excited to announce that The FPIES Foundation has established October 14th as Global FPIES Day. Global FPIES Day honors families by giving the opportunity to bring specific awareness to what FPIES is to the general public.


“There are days to recognize other food allergies and rare diseases, but FPIES is unique and the children are extraordinary. They deserve this day just for them,” says Joy Meyer, Executive Director of the FPIES Foundation. Meyer says, “October 14th was chosen specifically because the first research paper to mention the features of FPIES was published in October.”

In addition to establishing the FPIES Global Patient Registry and Global FPIES Day, achievements by the Foundation that were accomplished this year include:




    • Supporting teams raising awareness in the Food Allergy community by participating in various FARE walks nationwide.
    • Expanding our online Provider Database to increase the number of FPIES informed providers committed to helping children living with FPIES.
    • Achieving the Top-rated Non-Profit award from Great NonProfits, a distinction given to less than 10 percent of eligible non-profits.

    The work does not stop here. The FPIES Foundation is excited for the year ahead and plans additional announcements in the coming weeks about our latest efforts in raising FPIES Awareness. 



    Friday, August 15, 2014

    Advocating for Your Child in the Healthcare System




    To register for this webinar
    visit the ThriveRx website at ThriveRx.net
    http://www.thriverx.net/clinical_care/teleconferences_webinars.htm







    Tuesday, July 29, 2014

    The FPIES Global Patient Registry: Getting to Know Connect

    The FPIES Global Patient Registry Getting to Know CONNECT

    Part 3 of 3 in Registry Series

    What defines the CONNECT program?

    Patient Crossroads' CONNECT program is, “a registry platform, which allows patients around the world to join others in reporting their own experience of disease.”-- From the Patient Crossroads Advocacy Brochure

    According to the Patient Crossroads website, “PatientCrossroads is a place where all kinds of people can share and access medical data to hasten the search for cures. Our programs enable anyone—from individual patients to global research organizations—to collect and share disease data in a way that's controlled, transparent and centered on patients' best interests. . .  The CONNECT registry enables disease communities, regardless of size and shape, to collect and share de-identified patient data in a consistent and transparent manner.”

    For more, about de-identified data and Patient Crossroads' strict confidentiality policies, read here: https://www.patientcrossroads.com/advocacyfaq.html

    What do I need to know about the latest updates to the Connect program?

    Recently, participants received the ability to upload genetic testing results and growth charts to the database. It is essential to remember that if you elect to upload any information to the portal, you MUST remove any identifying information from the documents, such as birth date, medical record numbers, name, and so on. Printing out a copy of each electronic document, blacklining identifying information and then re-scanning to the computer for upload may be a potential way to approach this process. Uploading information is optional and does not affect participation in the surveys. For any questions about this process, please contact us at contact@thefpiesfoundation.org. For more about additional updates from CONNECT, please visit: https://www.patientcrossroads.com/

    What other organizations utilize the registry process through patient crossroads CONNECT program?

         The Alzheimer's Association
         The American Cancer Society
         Parent Project Muscular Dystrophy
         Government Organizations: NIH Office of Rare Diseases Research and RD-Connect (FP7 European Union Programme)

    For more, read here: https://www.patientcrossroads.com/advocacy-research-clients.html and here: https://www.patientcrossroads.com/industry-government-clients.html

    What will be coming up in the future?

         Over the next year, regular survey releases will include FPIES-specific, IRB-backed and “research-minded” surveys in combination with surveys targeting general health topics. We will further develop a strong foundation of data, impact existing and future research, and strengthen the collective voice of the FPIES community.
         The ability to become aware of clinical trials or other studies, posted in the portal by researchers or other medical industry professionals


    How can I register today?

    1.      Go to the FPIES Foundation's home page (www.fpiesfoundation.org) and click on the blue “Connect” logo on the left side of the page
    2.      You will arrive at the home page for The FPIES Foundation Global Registry. Click the blue box that says “Click to Register Now!”
    3.      Complete the “Consent and Registration” section. Click “Register” and you are ready to go!
    4.      On your dashboard page, you will be able to select surveys to complete at your convenience. View the results as you complete each one and learn more about the FPIES community as you CONNECT!! Be sure to register each member of your family diagnosed with FPIES
    5.      For PORTAL Registration, simply go to the patient crossroads homepage at www.patientcrossroads.com and click on the button that says “log in/sign up” and follow the prompts!
    6.      For additional support, contact us at contact@thefpiesfoundation.org

    Additional Resources: