About
Our vision is to serve the patient community as a patient-run organization—by patients, for patients—to raise awareness, foster community support, and advocate for equitable care and research for all those affected by IgG4-RD and other rare diseases.
Our mission focuses on funding patient advocate training, patient medical care costs, such as travel to qualified doctors, co-pays, as well as out of pocket or uninsured visits and treatments.
The IgG4-RD Life podcast is a platform where the voices and experiences of IgG4-RD and other rare disease patients are heard, valued, and shared. We are committed to spreading hope, education, and empowerment, one episode at a time.
This platform also provides resources from caregivers, medical personnel, allies, and organizations that are relevant to IgG4-RD and other rare disease communities, especially where equitable care and treatment is essential.
MEET YOUR CO-HOSTS
Mahsa Pazokifard
My journey through life has been defined by a series of health challenges that began from the moment I entered this world. Whilst navigating through years of pain and discomfort, an incident on a vacation triggered a chain of events that ultimately led to long-awaited diagnoses of Mikulicz and Sjogren's, shedding light on the underlying autoimmune/rare diseases that were causing my health challenges.
Through the numerous medical visits, tests, and procedures, and the online support groups, I've learned to advocate for myself, and others while seeking answers in the impossible.
I stand as a testament to the power of perseverance and patient empowerment in the face of adversity.
Let's continue to share our stories, support one another, and drive progress in healthcare for a better future!
Alex Streczyn
In the summer of 2018, my life took an unexpected turn when a mysterious fibrous mass developed on the right side of my skull. This marked the beginning of my challenging journey with IgG4-Related Disease (IgG4-RD) Pachymeningitis, a condition that affected the meninges of my brain. Luckily, I was diagnosed in December of that year. This early diagnosis was life-saving.
Navigating the intricacies of IgG4-RD deepened my understanding of the importance of connection, community, and science-based evidence in managing rare diseases.
Despite the physical and emotional challenges, my experience fueled a commitment to support others, foster a supportive network, and advocate for informed, resilient hope through the IgG4-RD community.