This eNewsletter contains news and information for anyone living with FOP and those who care for them. This includes family and friends, caretakers, physicians, researchers and IFOPA supporters.
FOP Midwest Family Gathering Registration Deadline October 20
Don't miss this opportunity to connect with other families living with FOP at the Midwest Family Gathering and Clinical Meeting, Nov. 5-6, 2016, in St. Louis, Mo. The event will include presentations from FOP researchers and clinical experts, small group discussions and the chance for people with FOP and their families to connect with one another. A limited number of clinical appointments with Dr. Fred Kaplan will also be available. Registration and hotel for FOP individuals is complimentary and registration for the first caregiver is discounted. Get more information and register now.
The Midwest Family Gathering is the first of several regional meetings the IFOPA hopes to offer each year. Email [email protected] and let us know if you would be interested in attending a regional gathering in your area.
FOP Drug Development Forum Returns in 2016
The Drug Development Forum will be in Boston this month. IFOPA Director of Global Research Development explains why it's so important for patient-centered organizations to have a central role.
Recently Betsy Bogard, Director of Global Research Development, was asked to share with the rare disease community how the IFOPA develops relationships with pharmaceutical companies. RARECast is a Global Genes podcast hosted by veteran journalist Daniel Levine. It focuses on the intersection of rare disease with business, science and policy.
IFOPA a Leader in the Development of Industry Guidelines
IFOPA leadership recently approved "Industry Guidelines" to outline a preferred partnership approach with pharmaceutical companies that ensures the independence of IFOPA as a patient-centered organization. The IFOPA has taken a leadership position in the sector by drafting these guidelines. Betsy Bogard, Director of Global Research Development for the IFOPA, was asked to present the guidelines, including why and how they were developed, at the Global Genes RARE Patient Summit in September.
The IFOPA is putting the final touches on a new website that will premiere before the end of the year. Stay tuned for the latest details as we add new enhancements to keep you more connected and more informed.
