Science & Data Internship

The Yaya Foundation for 4H Leukodystrophy is the sole patient organization focused on supporting families affected by this rare disease and accelerating research to discover therapies and a cure.

The Yaya Foundation is dedicated to finding treatments and a cure for 4H Leukodystrophy by funding and connecting critical research efforts and to providing education, support and advocacy for children and families living with 4H Leukodystrophy today.  Despite being in existence for just shy of 4 years, we have grown rapidly and have been recognized by the Chan Zuckerberg Initiative (CZI) via a prestigious Rare As One grant. During this time, we laid out the first iterations of our research roadmap, awarded a major grant to accelerate the development of a gene therapy and started a data collection program in collaboration with Rare-X.

Through our partnership with CZI, we recently gained access to a large collection of de-identified, real-world patient data drawn from claims data of more than 300 million US patients. We are offering an opportunity for a science intern (10-20h /week) to analyze this data set.


We are looking for a candidate who:

  • is pursuing an advanced degree in a relevant field such as Data Science, Health Care Informatics, Biomedicine or Life Sciences
  • has experience in data mining and analyzing large data sets
  • is interested in rare diseases and patient advocacy
  • is curious, loves exploring, asking questions and finding answers
  • is committed to the cause, highly organized and pays attention to details
  • able to work as part of a virtual team with opportunities to connect in-person in the Minneapolis and Boston area


Project description:

The successful candidate will work with the Yaya Foundation’s Research Director to explore this data set. Potential use cases include:

  • Understand the most effective ways of identifying patients with 4H Leukodystrophy (which does not have a specified ICD-10 code)
  • Gain insights into patient demographics
  • Understand a patient’s journey through their diagnosis and treatment.
  • Identify Care Teams for Education Outreach


About the Yaya Foundation

We are driven by the dream that one day, every person with 4H Leukodystrophy will have the chance to live a long, healthy life.

So the Yaya Foundation fights for these people and their families by acting as a catalyst and a connector—bringing researchers together to accelerate the pace of discovery, while connecting families with vital educational resources, expert care, and emotional support.

We won’t stop until we find a treatment and, ultimately, a cure.

The Yaya Foundation is the only advocacy group in the world fighting for people affected by this rare, inherited, neurodegenerative disease. In just three short years, the Foundation has:

  • been awarded a prestigious Rare As One grant from the Chan Zuckerberg Initiative,
  • hired a professional team to guide our strategy and innovation research agenda, as well as run day-today operations bringing us out of start-up mode,
  • launched a data collection program to advance what we know about 4H Leukodystrophy; engaging over 60 families from 14 countries in just nine months, and
  • awarded an exciting gene therapy proof of concept collaboration between one of the world’s leading 4H experts and leading gene therapy experts.


To Apply:

Interested candidates should apply by submitting a resume and cover letter expressing your interest and fit for the role to with “Yaya Foundation Science & Data Intern” in the subject line.

Applications will be reviewed, and upon qualification, we will contact you to determine next steps. The Yaya Foundation is committed to providing equal employment opportunities to all qualified individuals and does not discriminate on the basis of race, color, ethnicity, religion, sex, gender, gender identity and expression, sexual orientation, national origin, disability, age, marital status, veteran status, pregnancy, parental status, genetic information or characteristics (or those of a family member) or any other basis prohibited by applicable law.