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April 27, 2021: Forming a Foundation April 28, 2021: Research Ready

RareLaunch® Workshops

RareLaunch® Workshops provide useful information and hands-on training and advice from leading nonprofit experts to help launch a rare disease nonprofit or take an existing one to the next level. Click click on the tabs above for more information and to register for one or both sessions.

Forming a Foundation

If your rare disease community does not have a nonprofit “home,” have you considered what it might take to start one?  The Forming a Foundation workshop series can help you overcome the obstacles to starting a nonprofit and help give your rare disease community a strong voice with a nonprofit organization.

Speakers for the April workshop will include experts with experience in both nonprofit governance as well as those who have walked the path to developing a nonprofit for their rare disease, with discussion topics including:

  • Storytelling to build and activate your community
  • Ensuring your board and work reflect your community
  • Fundraising regardless of organizational size
  • Steps to nonprofit development
  • The importance of strategic planning to success

Following the workshop, participants will be provided with a toolkit including templates, checklists, and other guidance documents to reinforce the learnings.

Download Code of Conduct

Download Agenda

To access the recorded content from the December 2020 workshop, please register here

Research Ready

Because rare diseases often do not have any research or drug development activity underway, it is critical that patient communities are empowered and educated about becoming ready to effectively support research and development. If you are working with a patient advocacy organization and considering becoming more involved in research, the Research Ready Workshop will help you get up to speed on the process, consider your options, and feel confident in getting started.

The April training from leading subject matter experts and nonprofit rare disease leaders who have delved into research will include:

  • Establishing collaborative research partnerships 
  • Practical advice on establishing and funding a research program and natural history study 
  • Responsible data management practices 
  • Leveraging patient experience data 
  • Networking with rare disease nonprofit leaders 

Following the workshop, participants will be provided with a toolkit including templates, checklists, and other guidance documents to reinforce the learnings.

Download Code of Conduct

Download Agenda

To access the recorded content from the December 2020 workshop, please register here