Earlier this year, the GFPD received a grant from Global Genes to support our conference and some research of our families attending the conference about the financial impact of rare disease.
This grant came about as part of a larger initiative from Global Genes that included a first-of-its-kind landscape study on financial impact to patients and families.
Two of our team members have recorded a webinar about this report along with some findings from a survey we completed over the summer as part of our conference follow-up. Daniel Billingsley and Abby Pelster discuss those findings, a summary of the Global Genes study and a number of resources currently available to our families.
Additionally, this new data will help the GFPD develop further programs for families to address the financial impact of peroxisomal disorders – from diagnosis to treatment – on families and caregivers.
Melissa Bryce, executive director, said the information from the survey and the study will create a more direct pathway to family programming and support that address financial disparities.
“One of the most important – and not surprising – results of our survey is that financial stipends for families were a driving factor for those able to join us for the conference,” Bryce said. “Our goal from the board of directors and staff was clear. We wanted to ensure that programming, convening, education and learning would have as limited a burden as possible on our families attending the conference.”
Bryce also believes that continued communication with families about financial impact will help drive conversations around legislative advocacy, working with insurers and providers, and help clinicians and physicians understand the monetary toll of rare diseases.
“We often discuss the medical, psychosocial and even emotional challenges of peroxisomal disorders,” Bryce said. “But we also know that the financial barriers can significantly impair access to care. By better understanding these, we can implement programs and initiatives to take away those barriers so that families can focus on our Warriors.”
To view the Global Genes Landscape Study, download a pdf copy: https://resource-hub.globalgenes.org/kb/article/275-financial-advocacy-in-rare-diseases-landscape-assessment/
You can also watch the webinar on our YouTube channel: https://youtu.be/X61jPUBLQrY
Special thanks to Global Genes for their generous contribution to the GFPD and their dedication to families affected by rare disease.