Hu, Zhanzhi PhD

Speaker Information
First Name
Last Name
[email protected]
(512) 294-8571
Job Title
PhD, patient parent, advocate
As we develop programs and resources to empower our diverse community, we ask participants to select the response that best reflects their race and or ethnicity:
Asian or Asian American
What rare disease(s) do you represent?
How many years have you been involved with rare diseases?
10+ years
Upload or submit your biography


Please upload your headshot


Travel Distance from Los Angeles, CA:
I live in the SF bay area, with ~370 miles to the LA Convention center.
Presentation Information
Proposed Presentation Title
Newborn Screening, the game changer for rare diseases
Presentation Summary
I propose to present how the journey of my two sons led me to newborn screening research and advocacy, and why it’s critical in our battle with rare diseases.
Have you spoken previously for NORD?
  • Yes


If Yes, at which event (Name and Date)
NORD Summit, October 2022
Have you previously spoken at any rare disease events or are you planning to speak at any upcoming events within the next year?
  • Yes


If yes, please list the name and dates of your speaking engagements .
I’ve spoken at various events, such as Global Genes Equity Summit, MAGI East, Alliance for Regenerative Medicine reception, NASEM Roundtable, Simons Foundation Workshop, etc., as well as a number of podcast/interviews.
Please provide up to 3 examples of previous presentation experience, include links to videos if applicable.
Target Audience:
Parents with motivations to advocate for changes that will benefit rare disease communities, healthcare providers who’re interested and in position to join or start their own newborn screening research, industry representatives who’re interested in collaborating, policy makers & professionals who’re looking for advancing healthcare policy changes.
Learning Outcomes:
1, early diagnosis and treatment is the most important key to better outcomes;
2, newborn screening can boost the efficacy of existing treatments and facilitate development of new treatments;
3, policy changes and public/private partnerships are desparately needed for newborn screening.
Co-presenter or additional panelist recommendations
First Name Last Name Organization Job Title Email Address
Wendy Chung Boston Children’s Hospital Chief of Pediatrics [email protected]


As a potential speaker for the Living Rare Living Stronger Patient and Family Forum I agree: