Rare disease awareness event photo.

A Thank You to NORD’s Volunteers

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It is National Volunteer Week, which has us reflecting on the tremendous contributions of NORD’s volunteers across the country who help create, elevate, and promote our work on behalf of the rare disease community. Particularly, from my lens as the Director of Education Programs at NORD, I am filled with gratitude for all the volunteers who help us produce and deliver quality educational content in visual, auditory, interactive, and written forms to reach learners with many different learning styles.  

NORD volunteers serve on planning committees and give great thought, expertise, time, and energy to plan meaningful events for the rare disease community, filled with education and connection-making, including Rare Disease Day events; the Living Rare, Living Stronger NORD Patient and Family Forum; and the NORD Rare Breakthroughs Summit. Our planning committee members help us select topics, identify expert speakers, create networking opportunities, and help promote our educational programs through their healthcare teams, support groups and communities.  

NORD volunteers who speak for our events – both virtual and in-person – give the gifts of energy, time, vulnerability, and expertise to NORD and the rare community. We are so thankful to folks who time and time again are willing to join us (often traveling far!) to share their truths of living with rare diseases, explain difficult concepts in an easy-to-understand way, facilitate a lively discussion about hot topics for the rare community, or moderate panels with varying perspectives. We just can’t thank our speakers enough for their time and talents of storytelling, explanation, facilitation, and inspiration.  

NORD Students for Rare program volunteers are so often planning rare disease awareness activities on their high school and college campuses, putting on amazing Rare Disease Day events (often in partnership with Rare Action Network volunteers), producing awareness commercials to be shared in their communities, hosting fundraisers for NORD, writing rare disease reports for the NORD Rare Disease Database, helping with the NORD IAMRARE Registry platform, interning for NORD member organizations, creating abstracts for the NORD Summit poster hall, etc. etc. etc.! They are future healthcare professionals, researchers and life-long rare disease advocates working together on campuses across the United States to raise awareness, empower patients and caregivers, learn about rare disease symptoms and diagnosis, and impact care, research, and policy for the rare community. 

NORD volunteers are often incredibly busy researchers or clinician-researchers with labs and classrooms of medical or graduate students and who see patients in the hospital and at outpatient clinics. Behind the scenes, they make time to write, edit and update rare disease reports for the NORD Rare Disease Database (or supervise and mentor students who are doing so), review NORD continuing medical education curriculum, review and score abstracts for the NORD Summit Poster Hall, or advise us on learning objectives for conferences, videos, webinars, etc. We rely heavily on their donations of time and expertise and couldn’t be more thankful for their contributions to our work and the rare community.  

In sum, without the consistent support and contributions of our volunteers, we would not be able to produce education that incorporates as many perspectives and experiences, publish and deliver resources at the pace we are able to, or create as meaningful of learning experiences as we do. Thanks doesn’t cover it – Our volunteers help fill our cups to keep moving and fighting forward. Our volunteers share stories with us that make all our arm hairs rise. Our volunteers cheer with us as we reflect on the past 40 years of achievements and breakthroughs for people living with rare diseases and their loved ones. Our volunteers stand beside us and roll up their sleeves as we look into the future and all the work we have yet ahead of us. NORD volunteers, we thank you, from the depths of our hearts, for helping us to educate and empower this rare and special community we have the privilege of working on behalf of. 


Rebecca Aune 

Director of Education Programs