To celebrate and honor Rare Disease Awareness month (February) Lydia Seiders joins me on the show. She is a volunteer Maryland State Ambassador for NORD, the National Organization for Rare Disorders, through NORD’s advocacy arm the Rare Action Network. Her daughter was diagnosed with aplastic anemia, a form of bone marrow failure. This motivated Lydia to become an Ambassador for NORD. In this role, she leads about 200 network members across the state to raise awareness for approximately 600,000 patients affected by a rare disorder. Lydia leads educational initiatives and develops state-based campaigns to increase patient awareness. She partners with advocates nationwide to act on policy impacting the rare disease community.

Lydia also works closely with the Aplastic Anemia and MDS International Foundation and the national bone marrow registry - Be the Match. She assists patients and families globally obtain reputable resources for bone marrow failure. Most recently she began collaborating with RARE Revolution Magazine, a dedicated free rare disease publication. She will help to share in the direction of the Rare Revolution movement.

On This Episode We Discuss:

Her daughter, known as #EmmaStrong, diagnosis of aplastic anemia

Diagnostic journey

Aplastic anemia symptoms and cause

NIH’s role in Emma’s treatment

Current research for aplastic anemia

Lydia’s role as a state ambassador for NORD

Educational initiatives and campaigns for the rare disease community

NORD’s resources for parents and caregivers

Advice for parents and caregivers of a loved one with a rare disease

Resources Mentioned During The Show:

National Organization for Rare Disorders (RareDiseases.org)

RareAction.org

When signing up, their system will link you to your state’s RAN by your zip code

The Aplastic Anemia and MDS International Foundation

Maryland’s Rare Action Network Facebook Page

RAN is active in all 50 states, listeners can find their state to get involved

Be The Match (Emma’s Page)

Learn how to join the bone marrow registry

Learn more about Emma in this blog post part 1, part 2 and part 3. Stay updated with Lydia by following her on Twitter and connecting with her on LinkedIn.

Don’t forget to raise awareness this month (and every month) for rare diseases, especially on Rare Disease Day which is on Thursday, February 28th 2019.

Stay tuned for the next new episode of DNA Today on March 1st. New episodes are released on the first Friday of the month. See what else I am up to on Twitter, Instagram, Facebook and iTunes. Questions/inquiries for my guest, Lydia Seiders, or myself can be sent to [email protected].Don’t hesitate, we love hearing from listeners.