Rare disease patient advocates are taking the lead in research like never before, driven by the urgent need for new treatments. The RARE Drug Development Symposium hosted by Global Genes in partnership with Boston Children’s Hospital, Rosamund Stone Zander Translational Neuroscience Center (RSZ TNC), and the Termeer Institute is designed to equip advocates with the knowledge, skills, and connections to navigate early-stage research with confidence.
Love, Advocacy, and Belonging: Reflections from a Rare Disease Ally
By: Nicole Boice
As Chief Mission Officer at Global Genes—and as the proud parent of a son who is part of the LGBTQ+ community—I carry both a professional responsibility and a personal commitment to building more inclusive spaces for all.
I had to come out twice—once about who I loved, and again about what my body was going through…The complexity of being both Black and queer in the healthcare system is something I never needed to be taught—it was something I lived.
Let’s say your daughter has a progressive, degenerative, neurological disease — like mine does. That means today is the best day of her young life because tomorrow she will only get worse. Eventually, she may not be able to walk or be so wobbly that she chooses to have her leg amputated from the knee down to regain stability…
GeneDx Announces American Academy of Pediatrics Recommends Exome and Genome Sequencing as First-Tier Tests for Children with Global Developmental Delay or Intellectual Disability
Join us in supporting Coca Strong 5K/10K
August 3, 2025, Valley Cottage, New York
After overcoming leukemia, Coca Bernard was diagnosed with aHUS, an ultra rare autoimmune disease that affects the blood and kidneys. When the Make-A-Wish Hudson Valley offered Coca a wish, he chose to give back. He created Coca Strong 5K/10K to raise awareness not just for aHUS but for all rare diseases.
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