Happy Pride Month! At Team Telomere, we believe in the power of diversity, inclusion, and health equity. We are committed to supporting the LGBTQIA+ community and all those impacted by telomere biology disorders.
We recognize the unique challenges at the intersection of rare disease and LGBTQIA+ healthcare. Many in the LGBTQIA+ community delay seeking vital healthcare due to social stigma, inequality, and unconscious bias, which, in turn, leads to an underdiagnosis of rare diseases in this community. Whether it’s difficulty accessing care, finding affirming providers, or the complexities of accessing affirming care with a rare disease, we are committed to navigating it all with our community.
We also recognize this month the profound impact LGBTQIA+ activists have had in rare disease advocacy. HIV/AIDS activists were the first to pave the way for rare disease advocacy, along with a new way to advocate with the US Food and Drug Administration (FDA). This directly led to the passing of the first Prescription Drug User Fee Act (PDUFA) in 1992. This bill, through its repeated reauthorizations, has completely changed how patients engage with therapy development, particularly with rare diseases and drug approval speed. (source: RDLA Rare Diversity Hub)
Our mission is to encourage groundbreaking research, enhance diagnosis, and educate medical providers with a focus on inclusivity. We will continue working together towards a world where everyone receives the care and respect they deserve.
#PrideMonth #TeamTelomere #Diversity #Inclusion #HealthEquity #TelomereBiologyDisorder #RareDisease #LGBTQIA