For those of you who don't already know, ALD Connect, a non-profit consortium of doctors, pharmaceutical industry, and ALD patients and advocates, launched a Patient Portal allowing you to directly contribute to the scientific community’s understanding of ALD by providing self-reported information about your (or your children's) well-being and progress for research purposes. They also encourage the patient's friends and family to participate as well.
Even in its early stages of development (and only two weeks old), the Portal is already giving the scientific community patient input.
Questionnaires of those who have already signed up with the Patient Portal encouraged ALD Connect to direct its agenda towards these newly-identified patient-community needs at its Patient Learning Academy in October in Boston, MA.
As a rare-disease community, we need to continue to work together and start unifying our support for new advancement and therapies. The Portal is an easy way to contribute. Participate in the Portal today, and encourage others to as well.