PBD-ZSD Focus Group to take place at the Family & Scientific Conference

The ZSD Focus Group Project A program coordinated by the Global Foundation for Peroxisomal Disorders and funded by Global Genes A focus group is a data collection method used in research to obtain pertinent attitudes, perceptions, and opinions on a specific topic. In a public health forum, focus groups are used to help stakeholders (including patients, families, researchers and medical doctors) learn more about community opinions and health needs. This information can be used to help develop specific programs or services targeted to improve the wellbeing of that community in need. Focus groups are often used in conjunction with other needs assessment methods, like surveys. But needs assessme

Conference childcare provided by longtime volunteers and friends of the GFPD

We’re getting excited to welcome families to the 5th GFPD Family & Scientific Conference in just over two months! To help get families ready for the conference, I asked lead childcare volunteers Abby Simpson and Catherine Ozio to tell our families a little bit about what they can expect for their kids if they choose to use the free childcare room. Abby has been heading up childcare since our very first conference, and Catherine began volunteering in the childcare room in 2012 at our Orlando conference. Both Abby and Catherine have become fixtures for our kids each year and we’re so grateful to have them back again this year. We are so excited to see so many families already registered, and w

Scientific collaboration bringing GFPD Conference to Washington, DC this summer

Our Conference Planning Committee has been hard at work for months getting ready for what we know will be our best conference yet. GFPD Board President, Melissa Bryce Gamble, answers a few questions about this year’s new location and what families attending the conference can expect from the experience. Melissa, this is the fifth GFPD Family and Scientific Conference. Can you tell families a little bit about the purpose of our conference, and what they can expect this summer? Sure! The GFPD Family and Scientific Conference was born out of the desire to get families together with other families like their own, often for the very first time. As we know, being affected by such a rare disease me

Please join our family at the GFPD Conference in Washington, DC this summer

Greetings GFPD families, It is hard to believe that in less than three months many of us will be together in Washington DC at the 2017 GFPD Conference meeting in person for the first time and/or reuniting with friends who we haven't seen seen in two years or more. If you have not yet made a decision about this summer's conference, I hope that you will consider attending. Our family has been blessed by attending the 2011, 2012, 2013, and 2015 conferences. I will admit, as excited as we were to attend the first conference we were also a bit apprehensive. At that time we had only met one other family impacted by PBD-ZSD in person, and although I had connected with so many people online I was

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