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National Foundation for Celiac Awareness (NFCA)

Patient and Family Advisory Council Member


Position Background:
Members of NFCAs Patient and Family Advisory Council support the organizations mission:
The National Foundation for Celiac Awareness advances widespread understanding of celiac disease as a
serious genetic autoimmune condition and works to secure early diagnosis and effective management.
We empower our community to live life to the fullest, and serve as a leading and trusted resource that
inspires hope, accelerates innovation and forges pathways to a cure.
Engaging patients in the work of healthcare education, advocacy and research is essential to ensuring
successful outcomes. To continue meeting the needs of NFCAs community and ensuring that the
organizations work is health literate, NFCA developed a Patient and Family Advisory Council to advise
NFCA Staff as we work in the field of celiac disease and other gluten-related disorders.
True to its mission as a leading celiac disease patient advocacy U.S. organization, in 2014 NFCA saw a
need for increased input from our main audience the patient and family populations on opinions
related to the management of celiac disease and other gluten-related disorders and the strategic
development of NFCA programming. Through on-going engagement with the Patient and Family
Advisory Council since its launch, NFCA has and will continue to enhance how it activates and motivates
patients and families impacted by gluten-related disorders to successfully manage their own health and
healthcare.
NFCA is always eager to improve its work by directly engaging with patients and their families and
caregivers concerning the different ways patients navigate the gluten-free diet and the unique
challenges presented throughout the lifecycle management of this common genetic autoimmune
condition. Together with its Patient and Family Advisory Council, NFCA harnesses the experiences,
knowledge, and needs of a variety of individuals representing different perspectives throughout the
trajectory of a gluten-related disorders diagnosis.
As volunteers, the Council plays a key role in improving current and establishing and maintaining new
patient-centered NFCA activities and initiatives. Council members receive no monetary compensation,
though they will have the significant opportunity to:

Gain new insights


Direct the field of celiac disease
Extend their own personal connections
Cultivate leadership skills as representatives of the nearly 2.5 million-plus individuals NFCA
currently serves through its programs, social media networks and comprehensive website

Time commitment:

As a leading celiac disease patient advocacy U.S. organization, it is NFCAs responsibility to ensure that
the needs of those with celiac disease and other gluten-related disorders are met. The field of celiac
disease research is rapidly changing, as are the needs of the patients and families affected by this
common genetic autoimmune condition.
In general, we ask that Council members be available to assist with at least one inquiry a month. This
may include a phone call to ask for a quick opinion, looking over a draft of a document, or timely e-mail
correspondence about an upcoming project, among other things. The more you are able to help, the
more opportunity you have to shape the landscape of celiac disease awareness, education, advocacy
and research. Communications and requests for your opinion will occur both on an as-needed basis and
a long-term, project-based focus. NFCA may work with the Council as a whole or members on an
individual basis for these types of inquiries.
Outside of these inquiries, the Council will meet at least four times a year via video and/or phone
conference. Members shall not have any expenses associated with these meetings. Designated NFCA
Staff will lead in communicating with the Council.
Members of the Patient and Family Advisory Council will serve on a yearly basis, renewable, though this
may change based on individuals contributions, experiences and other relevant details as the Councils
annual work unfolds.
For 2016, NFCA is seeking up to 8 different people with one or more of the following qualities. Both
males and females from all areas of the U.S. are encouraged to apply. Individuals with
medical/scientific background are welcome to apply and should note this experience.
1. Individual between the ages of 35 and 50 who was recently diagnosed (within past year) with celiac
disease or non-celiac gluten sensitivity
2. Individual between the ages of 20 and 35 who was recently diagnosed (within past year) with celiac
disease or non-celiac gluten sensitivity
3. Individual over the age of 50 who was diagnosed (within the past one to two years) with celiac
disease or non-celiac gluten sensitivity
4. Individual who is diagnosed with celiac disease and asymptomatic (any age)
5. Adolescent between the ages of 11 and 15 who is diagnosed with celiac disease or non-celiac gluten
sensitivity
6. An individual who has been diagnosed with both celiac disease (or another gluten-related disorder)
and either Type 1 diabetes, thyroid disease, or another related condition
7. Anyone struggling to accept their diagnosis of a gluten-related disorder or looking to improve their
relationship with the medically necessary gluten-free diet (we also encourage family members of
those struggling to accept their diagnosis to apply and represent their diagnosed relatives
perspectives)
8. Individual who is diagnosed with celiac disease and has participated in celiac disease research in the
past or has experience with research participation in other disease fields
To apply:
1. Please complete and submit the online application questionnaire at: https://goo.gl/ikI8lY
2. Send NFCA your resume and contact information for at least one personal reference.

While the online application questionnaire is available in PDF format for review to help you prepare in
advance, all responses must be submitted electronically. This questionnaire can only be submitted once.
If you dont have a resume, please list your current academic and professional accomplishments, and
any past experiences relevant to the position. All steps of the application process must be completed by
Monday, November 30, 2015 in order to be eligible for consideration.
Please note that NFCA welcomes community members at all levels of engagement, whether you
regularly participate in NFCAs community, a support group, volunteer for celiac disease, or if you have
never been engaged in the celiac disease field at all.
Direct all communications to Samantha Tatulli, MPH, Patient Education Manager:
statulli@celiaccentral.org, 267-419-2104.
By applying, the applicant acknowledges that:

He or she will not engage in a business strategy that promotes or sells programs directly competing
with NFCAs during the term of service on the Patient and Family Advisory Council and for a period
of two years following the termination of service on the Council.
o Note: If chosen to be a member of the Council, he or she will be asked to sign a non-compete
agreement stating that the Council member will not engage in such business strategies
described above.
GREAT Kitchens, GREAT Schools, Colleges, and Camps, Family Talk, Seriously, Celiac Disease, NFCA,
and other names, slogans, marks and logos, used on or in connection with the GREAT Kitchens and
patient-focused programs and other NFCA goods and services (NFCA Brands), are the sole
property of NFCA. The NFCA Brands shall not be used without the written permission of NFCA.
Further, all content developed through work on the Council will remain the property of NFCA.
o Note: If chosen to be a member of the Council, he or she will be asked to sign a nondisclosure agreement acknowledging that the Council member will not share confidential
information about NFCA or any of its programs.