February 2021

The National Organization for Rare Disorders (NORD) is an incredible group of individuals, dedicated to support the needs of patients, families, and organizations impacted by rare diseases and conditions. Last year, we were extremely grateful for the opportunity to receive support from the team at NORD to boost our internal processes and technologies, therefore bringing us to a new height in the support we can provide you through virtual education.  

While Zoom fatigue certainly felt real by the beginning of 2021, we also knew that when you really do want to learn more about a topic that is so important to you, the frustration with a modality can easily be forgotten. So, we forged on! New topics brought themselves to light: this month, we began planning discussed the impact of histiocytosis on the Endocrine system and planned an online seminar discussing histiocytosis impact on the eyes and vision.  

We were also honored when asked by NORD to participate in an online seminar on Activating a Medical Advisory Board. The Histiocytosis Assocation has a full-time team, a volunteer board consisting of 9+ individuals who sit on various committees, and then also works closely with the Histiocyte Society and a Medical Advisory Committee who helps the Association by responding with expertise to particularly important and mission-critical questions. When I joined the Association as Executive Director in February of 2020, I inherited an amazing structure of support that had been developed over the years by the Board of Trustees and Founder, Jeffrey Toughill.  

Organizations such as NORD truly are angels to nonprofits like the Histiocytosis Association, as we rely on the generosity and support of the community to continue our important work. With the support of NORD, we will continue to provide top-notch education for all of you – our histio warriors, families, and histio clinicians/researchers!