February 28, 2022 is Rare Disease Day, otherwise known as RDD or #rarediseaseday. Many families in the rare disease community manage feelings of, isolation, depression, exhaustion, limited resources, lack of treatment and available resources as a result of a rare disease diagnosis.
At KrabbeConnect we are dedicated to those who are impacted by Krabbe disease. However, Krabbe disease is one of more than 7,000 identified rare conditions. This month our organization encourages our families, our followers, our stakeholders, and more, to get involved to #curekrabbe.
Here are a few suggestions for raising awareness about rare diseases, especially Krabbe:
Sign up to view NORD’s RDD world-wide webinar. This one hour event will be packed with entertainment from a star-studded guest lineup and offer a place to connect and chat with other rare community members and allies.