Welcoming the Next Generation of Rare Disease Advocates

College student Madison Shaw honored for her work on behalf of primary immunodeficiency patients.

College student Madison Shaw honored for her work on behalf of primary immunodeficiency patients
Madison Shaw (right) recently received the Luciano Vassalli Award from the International Organisation for Immunodeficiencies at the group's Global Patients Meeting in Lisbon, Portugal.

Madison Shaw has been advocating for people who have primary immunodeficiency diseases since she was 12. Now a college student, she recently received the Luciano Vassalli Award from the International Organisation for Immunodeficiencies (IPOPI). The award, given at the 2018 IPOPI’s Global Patients Meeting in Lisbon, Portugal, honors a young person who has already made an impact on the primary immunodeficiency disease community.

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Shaw, who has a primary immunodeficiency, founded Maddie’s Herd, an advocacy group that has raised thousands of dollars to increase awareness and fund research. Shaw also advocates for legislation that benefits rare disease patients and has been a guest speaker at youth empowerment events sponsored by the National Organization for Rare Disorders.

Someone who has a primary immunodeficiency disease has one of 350 rare, chronic diseases that involve the immune system. The person’s immune system is missing a part or does not function as it should.

IPOPI also honored Immune Deficiency Foundation founder Marcia Boyle at the meeting in Portugal. She received the LeBien Award, which recognizes an adult who has made a positive impact on the international patient community.