Beyond Celiac
Beyond Celiac
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About this organization
Mission
Beyond Celiac unites with patients and partners to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure.
About
DIAGNOSIS, RESEARCH & DISEASE MANAGEMENT: USING A PATIENT-CENTERED APPROACH AND WORKING WITH THE BEYOND CELIAC PATIENT AND FAMILY ADVISORY COUNCIL AND THE BEYOND CELIAC SCIENTIFIC ADVISORY COUNCIL, BEYOND CELIAC ADDRESS THE UNMET NEEDS OF THE CELIAC DISEASE/GLUTEN SENSITIVE COMMUNITIES, WORKS TO ACCELERATE RESEARCH, AND PROMOTES TESTING OF FAMILY MEMBERS OF THOSE WHO HAVE BEEN DIAGNOSED TO RAPIDLY ADVANCE DIAGNOSIS. BEYOND CELIAC PRODUCES RESEARCH SYMPOSIA TO EXPLORE THE CURRENT STATE AND FUTURE DIRECTION OF CELIAC DISEASE AND TO ENCOURAGE PARTICIPATION IN CELIAC DISEASE RESEARCH, INCLUDING CLINICAL TRIALS. THE SYMPOSIA ARE MADE AVAILABLE WORLDWIDE VIA A LIVE WEBCAST AND ON DEMAND REPLAY. BEYOND CELIAC COMMUNICATES THROUGH BEYONDCELIAC.ORG, SOCIAL MEDIA AND MONTHLY E-NEWSLETTERS. IN 2019, BEYOND CELIAC AWARDED THREE MAJOR CELIAC DISEASE RESEARCH GRANTS THAT WILL ACCELERATE RESEARCH IN DIAGNOSIS, TESTING, AND POTENTIAL TREATMENTS. CONTINUED DEVELOPMENT OF GO BEYOND CELIAC, A PATIENT DATABASE, INCLUDES THE LAUNCH OF A MOBILE APP. GO BEYOND CELIAC PROVIDES A DIRECT PATH TO ADVANCING RESEARCH AND THE AVAILABILITY OF CLINICAL TRIAL PARTICIPANTS. BEYOND CELIAC PROVIDES FREE EDUCATIONAL TOOLS ONLINE AND IN PRINTED MATERIALS TO ENHANCE THE PHYSICAL, SOCIAL AND EMOTIONAL WELL-BEING OF THE CELIAC DISEASE/GLUTEN SENSITIVE POPULATIONS OF ALL AGES AND ETHNICITIES. THE ORGANIZATION PARTICIPATES IN MAJOR NATIONAL AND INTERNATIONAL HEALTHCARE CONFERENCES AND SPEAKING ENGAGEMENTS.
Interesting data from their 2020 990 filing
The filing outlines the non-profit's goal as “Beyond celiac unites with patients and partners to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure.”.
When explaining its purpose, the activities were outlined as: “The national foundation for celiac awareness, doing business as beyond celiac, unites with patients and partners to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure. beyond celiac envisions a world where the 1 in 5 people who are undiagnosed can restore their lives through a timely and accurate diagnosis. we believe that patients deserve options to treat this chronic autoimmune disease beyond the gluten-free diet, which has been the only treatment for celiac disease since the 1800's. further, current research is proving that the gluten-free diet is not fully effective for most people. we aim to positively impact almost every aspect of celiac disease research by eliminating a major barrier to progress: the lack of reliable, in-depth patient information. our aggressive research agenda advances pathways to new treatments and, one day, a cure. what we do beyond celiac serves the 21 million americans requiring a gluten-free diet as the only current”.
- As per legal reporting requirements, the state of operation for the non-profit is PA.
- The non-profit's address for 2020 is listed as 124 SOUTH MAPLE WAY, AMBLER, PA, 19002 in the filing.
- As per the non-profit's form, they have 13 employees as of 2020.
- Does not operate a hospital.
- Does not operate a school.
- Does not collect art.
- Does not provide credit counseling.
- Has foreign activities.
- Is not a donor-advised fund.
- Is not a private foundation.
- Expenses are greater than $1,000,000.
- Revenue is greater than $1,000,000.
- Revenue less expenses is -$325,232.
- The CEO compensation package within the organization is determined through a review and endorsement by a neutral party.
- The organization has a written policy that describes how long it will retain documents.
- The organization has 14 independent voting members.
- The organization was formed in 2003.
- The organization has a written policy that addresses conflicts of interest.
- The organization is required to file Schedule B.
- The organization is required to file Schedule J.
- The organization is required to file Schedule O.
- The organization pays $859,188 in salary, compensation, and benefits to its employees.
- The organization pays $291,135 in fundraising expenses.
- The organization provides Form 990 to its governing body.
- The organization has minutes of its meetings.
- The organization has a written whistleblower policy.
- The organization has a business related family member transaction.
- The organization has fundraising events.
- The organization has grants to organizations.
- The organization's financial statements were reviewed by an accountant.