Rareshare News Articles

We had the pleasure of speaking with Ian Stedman—a lawyer, a father of two, and a rare disease patient and advocate from Toronto. He has Muckle Wells Syndrome, which is a variant of Cryopyrin-Associated Periodic Syndrome, or CAPS. Ian speaks to his experience with the diagnoses, treatment, and general navigation of the health care system as a patient.

When living with a rare disorder, conditions that even most doctors have never heard of, being recognized, acknowledged, and understood is difficult and sometimes impossible. With advancements in technology, individuals have more creative freedom and ability to tell their stories – rare or otherwise. On October 2nd and 3rd in Boston, DISORDER, the first Rare Disease Film Festival thrilled and inspired moviegoers, shining a light on the lives of individuals and families dealing with unique challenges and successes in coping with a rare disease.

The VanBrocklin's, a family from Wisconsin, received free clinical whole genome sequencing through Rare Genomics as part of its iHope program in collaboration with Illumina, Inc. Through this test, both children received answers in their diagnostic journey. It is our hope that more support is given for undiagnosed children, so that they may receive the treatments and care that they have desperately needed throughout the