With the help of the RARE Patient Impact Grant, The Global Foundation for Peroxisomal Disorders (GFPD) will be conducting continuing education unit sessions at the GFPD 2019 Family & Scientific Conference for physicians, physical therapists, and deafblindness professionals and educators.

What began nine years ago as a family support group online has grown to a nonprofit organization providing robust programming materials and education for patients and families around the world. Parents Shannon Butalla and Melissa Bryce Gamble teamed up to found the organization with the hopes of bringing families together who are impacted by peroxisomal disorders, including peroxisome biogenesis disorder-Zellweger Spectrum Disorder (PBD-ZSD) and the related single enzyme peroxisomal disorders.

The idea for the continuing education credits came after discovering the need for more educational opportunities for practitioners and other medical team members who encounter peroxisomal disorders. A series of conference sessions will provide continuing education units (CEU) or continuing medical education (CME) for various practitioners with the hope that medical teams will be able to serve their patients and families better.

As families register for the conference, they can indicate the medical team of their choice to invite to attend the event to advance their knowledge of peroxisome disorders further. For many families, it involves finding medical professionals that take a unique interest in patient and family care, and disease to help advance medicine and treatment.

“Our families are our best ambassadors,” stated co-founder Melissa Bryce Gamble. “We are giving them the power to say I really want this person to come.”

More indirect invitations for the conference are coming with the help of speech, occupational and physical therapy organizations which are advertising to their communities.

Two committees have put together the content for the related courses including GFPD’s scientific advisory board and conference education sub-committee made up of people who are very familiar with the specific modalities as well as with other rare diseases that have had similar educational issues.

As the success of the CMEs and CMUs continue, the organization is also looking at developing targeted CME specifically for ophthalmologists who treat patients with retinal disease, a common condition associated with peroxisomal disorders.

The conference runs July 10th through the 14th with scientist and medical professional sessions beginning on the 10th and family session starting the day after. The meeting will end with a celebratory reception with all event attendees

“This is a great mechanism to get outside of your comfort zone as an organization to learn something new,” remarked Bryce Gamble on the benefits of the grant.  

Melissa Bryce Gamble also serves as a member of the RARE Foundation Alliance Leadership Council where she helps establish and implement the Alliance’s goals and objectives.

Applications for 2020 RARE Patient Impact Grants are now open. We’ll be hosting a webinar on May 30th to discuss program guidelines, changes and have an open Q&A.

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