Summertime brings warmer weather, longer days, and perhaps some time for vacation or travel. For many rare disease organizations summer is a common time to gather families, medical and scientific experts together for a conference.
This summer, I have the great pleasure to attend several conferences hosted by organizations, all of whom are CoRDS partners. For those of you not yet familiar, CoRDS is a national rare disease patient registry for all rare diseases, that collects clinical and contact information to provide a resource to help accelerate research into these rare diseases. Anyone who has been diagnosed with a rare disease and anyone awaiting a diagnosis is eligible to enroll in the CoRDS registry.
This blog post is the first of a series of posts of the different conferences I attend. It will hopefully give you a glimpse of the purpose of CoRDS but also the role and importance of rare disease organizations who have partnered with CoRDS.
Last weekend, I was very excited to attend the CDG Family Network conference in Chicago, IL. CDG, or Congenital Disorders of Glycosylation, is a group of rare glycosylation disorders that affect an estimated 700-800 individuals worldwide. Like many rare diseases, it is thought that CDG is under-diagnosed and the actual prevalence is likely higher.
The CDG Family Network, led by President Cindy Wren-Gray and and a group of dedicated volunteers, planned an outstanding conference and invited experts who study and treat CDG to present on their research and clinical findings. The conference offered an opportunity for families to speak with the experts and reunite with other families with whom they rarely get to see face-to-face.
It was a very special weekend and I so appreciated the opportunity to meet the families affected by CDG. It provided me with the opportunity to explain CoRDS and the enrollment process to those who were interested. I also had the opportunity to meet researchers and clinicians of which helped me establish what type of information I can add to the CoRDS Questionnaire to ensure we are collecting information that will be useful for them.
With rare diseases, collaboration is paramount. Partnerships allow us to develop and expand the CoRDS registry, which we hope will accelerate research into rare diseases. Overall, this summer brings me the opportunity to attend family conferences to not only meet our CoRDS partners in person, but witness the great work they do for families affected by rare diseases.
If you are an individual affected by a rare disease, a family member, or a rare disease organization representative, please review the CoRDS Brochure and see our FAQ page to learn how you can join the CoRDS initiative.
Following is a current list of summer conferences:
- CDG Family Network, Inc. Chicago, IL (June 22-24)
- 11q Research and Resource Group, San Diego, CA (June 27-30)
- Glut1 Deficiency Syndrome Foundation, Indianapolis, IN (July 12-14)
- Batten Disease Support and Research Association, Charlotte, NC (July 18-22)
- Association of Gastrointestinal Motility Disorders, Boston, MA (July 26-29)
- FMD Chat, Asheville, NC (September 7-9)
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