A patient advocating for transparent science in rare disease research

RT @RalitsaMadsen: I have advocated for transparency in the PROS rare disease community, but the issue is so much broader, and I am thankfu…

RT @RalitsaMadsen: I have advocated for transparency in the PROS rare disease community, but the issue is so much broader, and I am thankfu…

I have advocated for transparency in the PROS rare disease community, but the issue is so much broader, and I am thankful that a patient turned researcher has done us all a service by exemplifying the need for transparency. https://t.co/Ojdh1kxQej

With #rarediseaseday2023, here is a research paper from a patient (Richard Yang) who is now blind due to BCD (Bietti's Crystalline Disease). Richard expresses his concern that "Nontransparent Science in BCD" might have implications across all Rare Disease.