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Empower Your Patient Community Voice

Finding a Group

If you are not currently involved in a patient group and wish to be involved in the therapy development process, you first want to find any patient groups already involved in advancing research for your disease, whether they are disease-specific or larger umbrella organizations. Competition for patients is of particular concern for rare diseases, because the patient population may be very small. Having one united patient group fosters collaborations and prevents fracturing within your rare disease community, allows for the pooling of resources, reduces duplication of efforts, and avoids sources of competition.

  • If you locate a group, their mission statement can help you determine whether the group is supporting or driving therapy development for your disease. 
    • If yes, contact the group either by email or phone to find ways you can become involved.
    • If not, they may be interested in expanding their mission to include therapy development, especially with someone willing to lead the way.
    • If the group is not interested in supporting therapy research, you may consider forming a group that solely focuses on supporting therapy development while still working with the established group to avoid duplicating efforts or splitting the patient population. 
  • If the group is an umbrella organization, you may be able to form a subgroup and work within their established system. Alternatively, you may need to form a separate group, but again continue to work with the larger umbrella group whenever possible.
  • If a patient group does not exist for your disease, you may wish to consider establishing one.

Resources

Making a Difference
From Molecules to Medicine: How Patients Can Share Their Voices Throughout the Drug Development Process Global Genes (link)
Data DIY – Your Involvement in Driving Understanding, Discovery, and Treatments for Rare Disease Global Genes (link)
FDA Patient-Focused Drug Development Guidance Series for Enhancing the Incorporation of the Patient’s Voice in Medical Product Development and Regulatory Decision Making U. S. Food and Drug Administration (FDA) (link)
Nonprofits: Innovators in Preclinical Drug Development FasterCures (link)
Faster Cures Webinars FasterCures (link)
From Anecdotal to Actionable: The Case for Patient Perspective Data FasterCures (link)
FasterCures Patients Count Program FasterCures (link)
On the Path to a Science of Patient Input FasterCures (link)
Innovator Spotlight FasterCures (link)
Discovery Documentary: First in Human NIH Clinical Center (link)
Assessing Meaningful Engagement in Drug Development: A Definition, Framework, and Rubric University of Maryland Center of Excellence in Regulatory Science and Innovation (link)
Principles of Community Engagement: Second Edition Agency for Toxic Substances and Disease Registry (link)
Starting a Patient Group
So You Think You Want To Start A Nonprofit Global Genes (link)
Starting A Nonprofit: The First Steps Global Genes (link)
Steps to Nonprofit Formation National Organization for Rare Disorders (NORD) (link)
Nonprofit Resources National Organization for Rare Disorders (NORD) (link)
What is a 501(c)(3)? Foundation Group (link)