Podcast

In this episode of the 2023 Advocacy Series, IFOPA Family Services Manager, Hope Newport speaks Deb Fowler (President and Founder) and Denise Goodbar (Executive Director) of Soft Bones Inc, a US-based patient advocacy group dedicated to the community of patients, caregivers and families living with hypophosphatasia. Deb and Denise share their insights and experience supporting families with hypophosphatasia as they navigated the new frontier of drug access following their first approved treatment.

Resource Webinar

Courtney Jones, Senior Director of Case Management at the Patient Advocate Foundation, presents in our 2023 Advocacy Series resource webinar on Financial Planning and Government Benefits. In this webinar, Courtney will discuss key aspects of insurance navigation (including denials, and appeals) and what to know about eligibility when enrolling in benefit programs.

For an additional resource webinar on this topic check out this webinar (referenced in the community panel as well) by Chartered Special Needs Consultant Debbie Nieman who provided an overview of the steps to take and factors to consider when planning for the special needs of your loved one with FOP.

Community Panel

FOP community members Jaclyn Rodriguez (mom to a child with FOP), Miriam Rocke (adult with FOP), Kim Shields (adult with FOP) and Patrick Doerr (adult with FOP) share their experiences with different types of government benefit programs. Each panelist's story highlights a different program that has been impactful in helping them live their fullest life with FOP or as the caregiver of someone with FOP.