New document is intended to define a preferred partnership approach and ensure IFOPA’s independence as a patient organization

At the urging of dedicated Board Member and Research Committee Chair, Moira Liljesthröm, the IFOPA has outlined principles to guide the organization and its representatives when engaging with the pharmaceutical industry.

“Moira was a driving force in getting these developed,” says Betsy Bogard, Director, Global Research Development of IFOPA. “She saw the need to create guidelines that define our values and our philosophy of partnering as IFOPA began to engage with more pharmaceutical companies.”

Following Liljesthröm’s vision, Bogard, with input from members of the IFOPA Research Committee and Board of Directors, began drafting the guidelines. The IFOPA Guidelines for Engagement with Pharmaceutical Companies are now available on the IFOPA’s website - click here. Ultimately, the goal of the guidelines is to allow IFOPA to support the development of therapies to meet patient needs while preserving IFOPA’s independence and ability to be an objective voice for people with FOP.

“We hope these are helpful for all stakeholders in the FOP community,” Bogard continues. “The guidelines are transparent and direct. People will be able to see exactly how IFOPA engages with pharmaceutical companies, especially when it comes to accepting funds and engaging in clinical trials.

“It’s our job to represent people with FOP and help protect their rights and privacy as we work towards finding safe and transformative treatments for FOP—and ultimately a cure.”

The guidelines are of interest to Bogard’s colleagues outside the FOP community who have urged her to share them with the wider international rare disease community.

“When we were developing an initial draft, I got input from a few colleagues in my professional network. Many peers felt that these guidelines could be beneficial for other patient organizations focused on rare diseases,” she says.

Bogard has been invited to speak about the IFOPA’s newly drafted engagement guidelines at the Global Genes Rare Patient Advocacy Summit in September of this year. While the particulars have yet to be ironed out, she would like to develop a roundtable to discuss the guidelines and their potential applications.

“My hope would be to gather patient advocacy leaders as well as representatives from pharmaceutical companies who interact with patient groups like IFOPA,” Bogard explains. “There are powerful forces on both sides of the equation and having thoughtful, well-established guidelines allows us to be respectful of both patients and the pharmaceutical companies we work with to advance research and discover treatments.”

Betsy Bogard works in the rare disease community to support development of transformative therapies. She’s currently the Director of Global Research Development for IFOPA. Her brother Jud has FOP, and her family were early founders and leaders of the IFOPA.