FABRY SUPPORT & INFORMATION GROUP
Mission
Fabry Support & Information Group (FSIG) is a 501(c)(3) nonprofit organization. Our mission is to raise awareness of Fabry disease and its symptoms and to improve the quality of life for those affected by Fabry. The FSIG website provides information and mutual self-help by linking patients and family members/caregivers. In this way members can support and encourage one another. An increased understanding of Fabry disease and emotional support may alleviate some of the burden associated with this rare disorder.
Ruling year
2000
Founder and Executive Director
Mr. Jack Johnson
Main address
108 NE 2ND ST PO Box 510
Concordia, MO 64020 USA
EIN
43-1890134
NTEE code
Specifically Named Diseases (G80)
Alliance/Advocacy Organizations (W01)
Specifically Named Diseases Research (H80)
IRS filing requirement
This organization is required to file an IRS Form 990 or 990-EZ.
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Communication
Programs and results
What we aim to solve
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Website/Communication/Publicity
FSIG's primary goals are to provide information, encourage advocacy, increase education and support. We also advocate for research through our communications between patients, researchers, and pharmaceutical companies. Members gain emotional support through mutual self help, which is so important to patients with a rare disorder. To help facilitate this FSIG maintains a confidential database of Fabry patients, which also serves as a means of documenting the increasing numbers of diagnosed Fabry cases. FSIG also maintains a library of information about Fabry disease and is continually updating this body of knowledge. An active Web site facilitates patient interaction and sharing of experiences. FSIG addresses patient concerns with the medical and pharmaceutical industries in increase understanding of patient needs.
Eyes on Fabry
Educate Optometrist and Optometry students about Fabry Disease and allow program participants to view Fabry patient's eyes first hand to better recognize Fabry disease in their Optometry practice.
Cooling Vest
Many of those affected by Fabry, have a difficult time with extreme temperatures. The cooling vest program provides a water cooled vest upon request, as funds are available.
FSIG Regional & National Patient Meetings
Information and Educational opportunities are provided at regional and national patient meetings for families, caregivers, health care professionals, and the general public.
Rapid Assistance Funds supporT
Through an application process, financial support would be awarded to assist individuals or families with temporary financial hardship resulting from the impact of those suffering with Fabry disease. Funds would be designated for a range of needs such as bridging to longer-term support services like PSI or state programs, access to Fabry-related learning opportunities and other needs yet to be determined. (No requests for treatment with any drug will be accepted.)
Information Services
FSIG provides the public with information about Fabry. Information requests are answered via internet website, email, mailings, and phone conversations. News mailings and our in house published Newsletter provide informational updates.
Newborn Screening
FSIG provides meetings where families new to the Fabry diagnosis, doctors and industry
can collaborate and build a strong foundation of valuable resources for the families.
These meetings provide valuable, up-to-date information about Fabry disease.
They also educate on clinical manifestations, disease progression, management, and treatment options for living with an incurable disease.
Where we work
External reviews
Photos
Videos
Our Sustainable Development Goals
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Financials
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Operations
The people, governance practices, and partners that make the organization tick.
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FABRY SUPPORT & INFORMATION GROUP
Board of directorsas of 6/2/2020
Mrs. Amy Young
No Affiliation
Debra Johnson
Jason Frett
Amy Young
Connie Kreps
Fred Battah
Mark Gelfond
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? No -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? No -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? No -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? No -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? No
Organizational demographics
Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.
Leadership
No data
Race & ethnicity
No data
Gender identity
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Sexual orientation
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Disability
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