Founder & President

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.

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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.

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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!

Founder

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. 

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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. 

Secretary

Nadia Bodkin

Nadia is a dedicated rare disease activist living with three rare genetic conditions. Her journey into patient advocacy began while studying pharmacy at Rutgers University. After graduating, she entered the rare disease ecosystem through executive leadership roles in various advocacy organizations, where she developed numerous community-focused campaigns, programs, and initiatives in partnership with industry and academic stakeholders—all with a singular goal: to support and empower individuals within the rare disease community.

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With over a decade of experience designing and implementing initiatives across the therapeutic development continuum, Nadia founded the Rare Advocacy Movement (RAM) in 2017 to address the evolving needs of the global rare disease community. RAM has since grown into a global collaborative network that creates opportunities for community-based and community-focused stakeholders across the ecosystem.

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Given a prognosis in 2012 that framed her life in finite terms, Nadia lives with urgency and intention. She continues to advocate fiercely for the rights and well-being of people affected by rare diseases, disabilities, chronic illnesses, and neurodivergence—driven by a personal mission to make every moment count.