Greenwich Proclaims First Rare Disease Awareness Day

In a significant move for the rare disease community, the Town of Greenwich formally proclaimed February 26, 2020, as its first Rare Disease Awareness Day. This event, held at Town Hall, aimed to cast a spotlight on the more than 7,000 known rare diseases, many of which are under-researched and often overlooked. For individuals and families affected by inherited retinal diseases (IRDs), this local initiative underscores the broader global effort to raise awareness and advocate for better understanding, research, and support for rare conditions.

The proclamation and accompanying educational activities were part of the worldwide Rare Disease Day observance, which takes place annually during the last week of February. The global campaign for Rare Disease Day 2020, held on February 29th, focused on the message: "Rare is many. Rare is strong. Rare is proud!" This message resonates deeply within the IRD community, where collective strength and pride are essential in navigating the challenges of progressive vision loss.

Key Highlights from Greenwich's Awareness Day

Greenwich's Rare Disease Awareness Day featured talks from several prominent figures, including First Selectman Fred Camillo and officials from Senator Richard Blumenthal's office. John Hopper, Co-chair of the national Rare Cancer Coalition and President of the Greenwich-based Fibrolamellar Cancer Foundation (FCF), also spoke at the event. Lesley Bennett, State Ambassador for the National Organization for Rare Disorders (NORD) Rare Action Network, was among the numerous rare disease organization representatives present.

First Selectman Fred Camillo emphasized the personal connection many have to rare diseases, noting that one in every 10 people has a rare disease. He expressed pride in Greenwich's organizations for their leadership in raising awareness and fostering research interest. Camillo also shared that the issue was personal for his family, as his sister lost her life to a rare form of pediatric leukemia.

John Hopper highlighted the involvement of global foundations like the Chan Zuckerberg Initiative (CZI), which launched its "Rare As One Network" to bring hope to the rare disease fight. The FCF was notably chosen as an inaugural cancer foundation for a CZI Rare As One Network Grant in early 2020.

Impact on Patients and Families

For patients and families living with inherited retinal diseases, events like Greenwich's Rare Disease Awareness Day are crucial. They provide a platform to elevate the visibility of conditions that, while individually rare, collectively affect millions worldwide. Increased awareness can lead to greater research funding, better diagnostic tools, and improved access to treatments and support services. The emphasis on collaboration among various rare disease organizations and the involvement of policymakers can pave the way for more equitable access to diagnosis, treatment, care, and social opportunities for those with rare diseases.

Moving Forward

The commitment shown by communities like Greenwich in dedicating a day to rare disease awareness is a vital step in ensuring that IRDs and other rare conditions receive the attention they deserve. Continued advocacy and community engagement are essential to drive progress in research and support for all affected individuals.