Surveys
UMDF FY27-29 Strategic Plan
UMDF’s FY2027–29 Strategic Plan was built by the community, for the community. Together, more than 200 voices told us what’s needed most: faster diagnosis, better access to care, deeper collaboration, stronger awareness, and increased investment in transformational research.
Those insights became the backbone of our plan. Now comes the most important part – putting it into action. These surveys help us decide how to carry out each goal, where to start, and how we’ll measure progress. Your input helps make sure this work makes a real difference for everyone affected by mitochondrial disease.
Your perspective – which we intend to make an annual touchpoint – helps us see clearly where we’re making progress toward that plan, and where we still have work to do.
Why Your Participation is Important
You help us understand where we're starting from.
Many of our goals for the next three years begin with measuring where things stand today: how long diagnosis takes, how easy it is to find trusted information, how well UMDF works as a partner, and more. Your answers become the baseline we measure our progress against and report back to you.
Your experience shows us where diagnosis and care break down.
We’re building a referral network, working in regions with few mito specialists, growing the number of clinicians trained in mitochondrial medicine, and creating tools to help with prior authorizations and appeals for new therapies. Your input tells us where to start and what will make the biggest difference.
You help shape the resources our community will use.
We’re building the Mito Resource Hub, one central place for education, care navigation, and support. The survey is your chance to tell us what’s missing and what would actually help.
You help us build a stronger research and advocacy community.
We’re creating new ways for patient groups, clinicians, researchers, industry, and policymakers to work together, including the newly launched advocacy coalition and new collaborative events. Your feedback helps make those efforts useful to the people they’re meant to serve.
PATIENT & CAREGIVER
Please complete this survey if you are a:
- Patient living with mitochondrial disease
- Family member of a mitochondrial disease patient
- Caregiver of a mitochondrial disease patient
- Bereaved Family members and Caregivers
CLINICIAN / HCP
Please complete this survey if you are a healthcare provider who provides any form of medical care for mitochondrial disease patients.
While this list is not exhaustive, this could include Specialists, Physicians, Physician assistants, Nurses and Nurse practitioners, Therapists, Dietitians, Genetic counselors, Psychologists and counselors, Care coordinators, Case managers, and Research coordinators.
COLLABORATOR
Please complete this survey if you are a:
- Researcher
- Representative of an Industry Partner
- Representative of a Patient Advocacy Organization
- Representative of other Allied Companies or Organizations
To promote research and education for the diagnosis, treatment and cure of mitochondrial disorders and to provide support to affected individuals and families.
8085 Saltsburg Road, Suite 201
Pittsburgh, PA 15239
1-888-317-UMDF (8633)
Mission of UMDF
We collaborate to support and empower mitochondrial disease patients and families, drive awareness, mobilize advocacy, improve access to diagnosis and quality care, and accelerate breakthroughs in treatments and cures.
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