The Myhre Syndrome Patient Registry -
the single best thing we can do
Everyone’s situation with Myhre Syndrome is somewhat different—different interests, different frustrations, and different joys. But one need is universal—the need to develop treatments and therapies for Myhre.
Enrolling in the Myhre Syndrome Patient Registry may be the single best thing we can all do to help move that process along. And it only takes about 30-45 minutes to enroll.
The Myhre Syndrome Patient Registry is coordinated by CoRDS (Coordination of Rare Diseases) and is the largest, free international rare disease registry. CoRDS builds a natural history of a disease—symptoms, diagnosis, disease progression—by compiling information from multiple patients over a long period of time from all over the world. CoRDS can then comb the data and connect patients and interested researchers.
If you are like me, you avoid surveys and may find them generally off-putting.
I always worry that my answers will not perfectly reflect my situation and will skew the results or somehow not be useful. I often let the perfect be the enemy of the good.
But the patient registry is different! I compare the patient registry to having an eye examination and having to choose which line of letters reads more clearly. No matter how much I agonize between choosing one or the other, I always end up with a prescription that improves my ability to see.
While I still do not fully understand how it all comes together, I know that it works—every time! And that my responses, however imperfect they may be, drive the entire process.
So it is with the Patient Registry.
The future has never been brighter for rare disease research. Innovation is uncovering a better understanding of all rare diseases and leading to more targeted approaches to drug development.
Myhre patients are the key to understanding Myhre. Researchers and scientists rely on patients to advance their understanding of a rare condition - the diagnosis, symptoms, and how it progresses.
There is strength in numbers and nowhere is that more true than with a rare disease such as Myhre. By enrolling in the registry, we can create a greater awareness of Myhre and greater motivation for drug development.
A patient registry is a catalyst - Having a storehouse of information about Myhre enables researchers to find patients, engage in research, and develop treatments.
Please check out the Patient Registry. Try to find an extra 30-45 minutes to enroll and share your health story with researchers and clinicians around the globe. You will be playing an active role in improving outcomes for the entire Myhre community.
It may be the single best thing that we all can do.