At Rare U, we understand your unique needs and struggles because we are you: we are a collective of individuals and families affected by rare disease committed to providing a supportive community and increasing rare disease awareness. Finding ourselves and others facing a lack of information and care access in the Inland Northwest, Rare U was established in order to solve two problems: eliminate the feeling of isolation among families dealing with rare diseases, and advocate for better access to research and care by collecting information on rare disease experiences from people like you.
WE ARE RARE U
We are a non-profit dedicated to rare diseases
OUR STORY
“Welcome to Rare U.
In (2017?) my husband and I were suddenly confronted with a harsh reality when our youngest daughter, Ruth, was diagnosed with a rare genetic disease known as tuberous sclerosis complex (TSC). As we stumbled into a world we never imagined our family would be a part of, it soon became apparent that our limited access to local rare disease treatment and resources was making the unique challenges our family now faced that much more difficult. Searching for specialists, navigating the complicated healthcare system, and an increasing sense of isolation was taking its toll. What I longed for, and what I realized other families in similar situations longed for, was an active support network and easier access to rare disease medical treatment. And out of this longing and desire for change came Rare U.
It is our intention that Rare U would serve as your respite and advocate, a foundational system to come alongside you in your ongoing journey as a caregiver or someone living with a rare disease. Thank you for joining us.
Mary McDirmid, Founder
#adventureruthie
ABOUT RARE U
OUR MISSION
Rare U is a network of individuals and families affected by rare diseases dedicated to providing support, furthering research, and creating access to rare disease information and healthcare in the Inland Northwest.
THE PILLARS OF RARE U
Rare U exists to accomplish three goals within the Inland Northwest:
1 ) Through gatherings and events, nurture a community made up of individuals and families affected by rare disease in order to provide support, knowledge, and resources for caregivers.
2 ) Gather personal data from our community to expand our understanding and collective research of rare diseases.
3 ) Utilize this data to advocate at a top-level for increased local access to rare disease treatments, information, and the advancement of medical research.
