While horses are more common, zebras do exist. People with rare diseases deserve a diagnosis and fair access to care. Come and learn.

Advancing Health Equity: A Community Conversation for Rare Disease Day

February 25, 2021, 2-3 PM Eastern Time

Next Generation Technology to Manage Rare Diseases

February 26, 2021 for physicians

February 27, 2021 for families

All are welcome to attend both days.

Rare Disease Day was set on February 29 — a rare day that occurs only once in four years.  On days with no leap year, we celebrate it on February 28.  Our mascot is the zebra — based on an old saw frequently heard even in medical schools “when you hear hoofbeats, think horses, not zebras.” Yes, start by thinking of the more common causes of those symptoms — but don’t forget that zebras actually do exist! And those of us with rare diseases deserve a diagnosis too.  Diagnosis is the first step in solving any problem.

There is magic in finding others on the same journey with you.  While there might be only one other person with the same rare disease even in a very large city, the internet has made is possible for us to find others even a world away, and to form support groups, learn lessons, share ideas, and comfort one another remotely.  Going to a support group meeting warms your heart and soothes those emotional wounds.

This year, in times of COVID-19, events are virtual.  While we miss the synergy of meeting and hugging people on the same journey, we benefit from the extended access a virtual event provides — no travel, no hotel expense, no commuting event when it is in your own town.  The bond of shared experience binds us together, even physically distanced.

I know we often feel “zoomed out,” but consider the comfort that knowledge can bring.  Make yourself a comfortable space, bring your favorite beverage, and settle in to listen and learn and contribute your own knowledge to the group.

Here are some particularly enticing events just for zebras like us and the people who care about us:

Advancing Health Equity: A Community Conversation for Rare Disease Day

Date: February 25, 2021   Time: 2:00 – 3:00pm ET

People with rare diseases often have limited access to diagnosis, treatment and care. The disparities can be even greater for people from underrepresented racial, ethnic or other minority groups. During this special Rare Disease Day event, two patient organization leaders, a medical professional and a medical student will discuss current initiatives and possible approaches to advancing health equity.

NORD encourages all participants to share their questions and comments in the interest of an open and impactful discussion on this critical topic.

This webinar is intended for patients, caregivers, students and the general public.

for agenda and registration details see REGISTER NOW

Next Generation Technology to manage rare diseases

Next Generation Technology to Manage Rare Diseases

The University of Alabama at Birmingham, Children’s of Alabama, Alabama Rare and the Alabama Genomic Initiative will host the 8th Annual Rare Disease Genomics Symposium via Zoom on Friday, Feb. 26. and Saturday, Feb. 27. This two-day symposium will focus on science and research as well as patient advocacy. The sessions on Friday are focused for medical providers and researchers and the sessions on Saturday are focused for patients and caregivers. However, everyone is welcome to attend both days. The symposium is free.

Friday’s Keynote address, “Personalized Medicine for Rare Diseases: Lessons Learned from Chasing My Cure,” will be delivered by Dr. David Fajgenbaum,  an American immunologist and author who is currently an assistant professor at the Perelman School of Medicine of the University of Pennsylvania. He is most well known for his research into Castleman disease.

For agenda and registrations details see https://www.uab.edu/medicine/genetics/news-events/rare-disease-day-symposium