Wednesday, August 30, 2017

Raising FPIES awareness on The Mighty

A diagnosis of FPIES can be life-altering.  So, when The Mighty asked our community for some of the things parents of children living with FPIES are doing, because of the diagnosis, that other people may not realize, the response was incredible.  

With over 150 million readers and thousands of contributors, The Mighty has been building a community of online rare disease support.  They “publish real stories by real people facing real challenges”.   They have created a safe platform for rare disease community members and organizations to connect with others, share their stories while raising awareness and support for rare diseases as a whole.  Together we are strong. 

The Mighty has given us the opportunity to share your experiences in stories such as:

We are proud to be among the over 200 rare disease non-profit organizations that support and partner with The Mighty. We will continue to bring additional awareness stories in the future. 

If you would like to contribute a story, please visit

Wednesday, August 16, 2017

Power of the PIN

In 2013 we, at The FPIES Foundation, presented the first-of-its-kind FPIES Global Patient Registry through the Patient Crossroads CONNECT program a patient registry platform companyLast year, Patient Crossroads underwent a rebranding to become AltaVoice.  Through Altavoice we were introduced to the Power of the Patients Insights Network (PIN) which enables us to further amplify the voice of children and families living with FPIES to help researchers and potential drug developers find better treatments, faster.

What is AltaVoice?
AltaVoice, formally Patient Crossroads, is a patient-centered data company that optimizes the search for better treatments for diseases.  They build and host Patient Insights Networks (PINs). PINs are ideal for collecting, curating and sharing patient and clinician reported health data. Altavoice works with drug developers, advocacy organizations, like The FPIES Foundation, and academic researchers, uniting them with patients to help improve lives.

What is a PIN?
A PIN stands for Patients Insights Network.  An AltaVoice PIN is more powerful than a traditional registry. It is an interactive, online platform for surveying patients, uploading medical records, tracking health outcomes and sharing de-identified disease data. Additionally, unlike typical clinician-driven registries, PINs are patient powered. The AltaVoice PINs make it easy for families to share their child’s experience, contribute medical data and maintain their privacy while being connected to the latest research, treatment and disease education opportunities.

Sharing Data & Improving Care
The AltaVoice PIN model was built with patients at the center, in control of their data. They believe strongly that advances are made faster when data collection is standardized and advocacy groups, such as ours, include the data in a global network, among other rare diseases that may share commonalities.
We share AltaVoices goals to encourage the sharing of de-identified data and studying findings to help patients learn how others manage similar health challenges. Sharing data also helps quantify the patient journey and build a stronger case for improving care.

Your Privacy
AltaVoice remains passionate about using their expertise to save time, lower costs and improve patients’ lives in a protected environment. Protecting patient data while providing broad access to health information is the cornerstone of their system design. AltaVoice rigorously manages and operates all systems to comply with HIPAA, FISMA and data and patient protection laws.

Inherited & Rare Diseases
AltaVoice has also partnered with Invitae to create new offerings to advance research and access to care for patient with inherited and rare diseases.  While FPIES is not known to be a genetic condition, this merger enables our registry to be open to collecting the data needed for investigating FPIES as a genetic condition.  We are excited for these possibilities under our free FPIES Patient Registry. 

The AltaVoice PIN provide patients, The FPIES Foundation, and research groups with a platform where they direct how, when, and with whom to share their clinical, and in the future, genetic, information to benefit their children and families and further research efforts for FPIES.

Register on the FPIES Registry here: