The Foundation for Sarcoidosis Research (FSR) is the nation’s leading nonprofit organization dedicated to finding a cure for this disease and to improving care for sarcoidosis patients. The FSR believes that the combined efforts of patients, supporters, academic and industry partners, medical providers, and investigators, and regulatory authorities will propel the discovery and development of a cure for sarcoidosis.
Biotech and pharmaceutical companies play an important role in the discovery of treatments for sarcoidosis. FSR has built relationships with multiple biotech and pharmaceutical companies to gain insight into research needs and opportunities with the goal of accelerating the development of sarcoidosis therapies. The following document states the policies regarding the FSR’s relationships with industry, as well as outline the oversight of these partnerships by the FSR Board members and the FSR Industry Advisory Board.
FSR Statement of Independence
The Foundation for Sarcoidosis Research is a non-profit dedicated to finding a cure for this disease and to improving care for sarcoidosis patients. Consistent with that, we seek to advance many different programs that progress this mission. FSR and those in biotech/pharmaceutical industry have unique capabilities as well as a common goal of finding a better way to treat sarcoidosis. FSR may accept monetary support and in-kind donations from biotech/pharmaceutical companies and related industries to advance research or other programs. FSR continually evaluates our activities to ensure appropriateness of its partnerships. Regardless of funding received or collaborative projects undertaken, FSR’s programming, research priorities, communication, and overall mission will never be influenced by industry support. As a registered charity, we take our public benefit obligations seriously; at the same time, we will be discreet and ethical in our dealings with industry and academic partners.
FSR will withdraw from any activity that places our independence or reputation at risk. We will not allow control over our activities in return for grants, donations, or sponsorship. FSR will disclose the name of any of its industry partners on the FSR website.
FSR Industry Policy
- The FSR will make no commitment or effort to promote or endorse specific companies or products in any way.
- All industry/corporate relationships must be in alignment with FSR’s mission. The FSR Board of Directors has the authority to deny any relationship that could jeopardize FSR’s nonprofit status or reputation.
- The FSR Industry Advisory Board (IAB) will evaluate all potential industry/corporate relationships and periodically review ongoing collaborations will monetary value of over $1000 to ensure mission-related benefits. The IAB (including Board of Director representation)will make recommendations to the FSR Board of Directors regarding its findings.
- All FSR IAB members, staff, and related parties will be required to disclose any conflicts of interest with industry/corporate partnerships, including affiliations and/or monetary investments in these.
- FSR will not provide partners with direct access to our contacts other than those generated by the collaboration itself. We will not share or sell details of our networks or contacts.
Use of the Foundation’s name or logo
- FSR will not allow its name, logo or branding to be used by collaborators without our express, written permission.
- FSR will monitor the development of therapeutic options and clinical trials relevant to sarcoidosis, including pending applications for FDA or other regulatory authority, and will provide unbiased information to its constituents and the general public. Except at its sole discretion, FSR will refrain from providing testimony or submissions in its name in direct support for or against any specific therapeutic option. Decisions to provide experts testimony or submissions will be based on ensuring advancement of the mission, and will not be monetarily based.
- Our research grants, education materials and other programs are subject to review by our staff, academic scientific advisors and our Board of Directors only.
- Industry sponsors are not included in academic grant review, and they are not part of the decision making bodies when it comes time to decide the future investment of the Foundation in any research program or outreach activity.
FSR reserves the right to partner with any academic or industry group regardless of any previous, existing or future relationship