Welcome to MarylandRARE
Bringing advocacy into action to effect change & improve the quality of life for the Rare Disease Community in Maryland.
Have your voice heard
Maryland Rare Disease Community Needs Assessment Survey is Live!
The Maryland RDAC (Rare Disease Advisory Council) has created a Rare Disease Community Needs Assessment Survey. The survey will be used to illuminate the lived experiences of the Maryland rare disease community.
The purpose of this survey:
- To understand Maryland's unique, complex and often underserved rare disease community.
- Identify how many people in Maryland are living with rare diseases and which rare diseases are most prevelant.
- Identify the depth and impact rare diseases have on Marylanders.
- Illustrate the specific needs of the rare disease community.
- Understand the barriers and challenges to quality and effective care.
- Identify if current resources and support is effectively reaching the community, as well as what additional resources are needed.
The results of this survey with help to prioritize issues for those who work toward improving access to care and improving quality of life to best serve the rare disease community. Understanding the current challenges these patients, families and care-partners have to navigate as well as the impact living with a rare disease has on individuals and communities is crucial for improving and developing impact solutions and support.
Maryland Rare Disease Needs Assessment Survey
MarylandRARE
Our Community
There are roughly three quarter of a million Marylanders living with a rare disease, half are children.
Standing by our mission, we provide our members the opportunity to meet and turn lived experiences into action.
The Three I’s of MarylandRARE:
- Increasing rare disease awareness
- Influencing public health policy outcomes
- Impacting health care deliverables and research discovery
Our Mission
Contact Us
MarylandRARE
Welcome
MarylandRARE - (Research, Advocate, Resource & Educate) is a diverse coalition of rare disease community stakeholders.
Brought together by lived experiences, this coalition of rare disease patients, families and caregivers, are working to bridge the gap regarding understanding, information, and resources that lead to systemic change at the local, state, and federal levels of government.
Our Partners in RARE
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