About ACTion Partners, LLP
We are a consulting partner specializing in rare diseases. With a unique blend of professional expertise and lived experiences, the ACTion Partners team collaborates with organizations to drive meaningful change in the rare disease space. Our experience spans a wide range of rare disease, strategic business and nonprofit activities applicable for state, national and global applications.
Sample of Expertise and Services:
- Strategic Leadership and Planning: Guiding organizations in developing and implementing effective strategies for rare disease initiatives.
- Patient Advocacy: Championing patient-centered decision-making and ensuring the patient voice is heard in care, research, and policy.
- Nonprofit Management: Providing expertise in nonprofit leadership, development, and operations.
- Programming and Projects: Develops unique programing that imbeds thoughtful best practice thinking for long-term success
- Rare Disease Consulting: Offering tailored consulting services to address the unique challenges faced by rare disease communities.
- Clinical Trials and Research: Consultation on patient engagement and participation in clinical trials and research.
- Health Policy and Advocacy: Advising on strategies to influence healthcare policy and improve access to care.
Meet our President
As a long-term CEO, Kimberly has a proven track record of building and leading organizations. Her leadership as the CEO of RareRising, a nonprofit research and pilot lab focused on rare diseases and prior President and CEO roles at Global Genes a worldwide rare disease nonprofit and Hemophilia Federation of America, a nonprofit serving bleeding disorders, provide valuable knowledge and experience that is beneficial in advancing rare disease. As a parent of a child with a severe rare disease, Kimberly also brings a deep personal understanding of the challenges faced by rare disease patients and their families. This lived experience informs her work and strengthens her commitment to patient advocacy.
Currently, Kimberly actively serves in many roles across rare disease such as:
- Member of PCORI’s Rare Disease Panel
- Advisory Council member of the Rare Disease Diversity Coalition
- Advisory Council member of the FAIR Time for Women Coalition
- Board member and President of the Wisconsin Rare Disease Alliance coalition
- Board member at HECI, a nonprofit bringing genetic testing and repurposed drugs to sub-Saharan Africa
- and more
Let's work together!
Contact ACTion Partners today to speak with Kimberly Haugstad and her team to discuss your consulting needs.
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