My Family and I just returned from spending 7 days in San Diego where we were attending the Little People of America’s annual conference. This was a big conference for our non-profit GrowingStronger.org. We announced the ranking (grant awardee) of submissions to the Grant for Study of Skeletal Dysplasia GSSD (see www.growingstronger.org for more). The announcement was made at annual medical advisory board meeting. This meeting host the top 30-40 doctors involved in managing skeletal dysplasia.
Now back to how this relates to Doctella. During the conference I had the privilege to spend quality time with the leading researchers and doctors involved in skeletal dysplasia. I was delighted to learn that experienced doctors have created SDMC (http://skeletaldysplasia.org/) a new guidelines group to help the management of skeletal dysplasia. Their first guideline will address management of Foramen Magnum Compression. During my discussions we explored the power of structuring these new guidelines using the Doctella format. The new guidelines can be built with recommendations for doctors with areas to consider (questions doctors should ask themselves) but also include a reciprocal patient checklists (questions that patients should ask). We are very excited with our potential partnership with SDMC and brining world-class expertise to patients and their providers across the world. We will explore this model with other rare disease organizations. The goal is to democratize the experience of a handful of specialized doctors to providers and patients world-wide so they can benefit from the knowledge available to us today.