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RareLaunch® Workshops

Presented on December 2 and 3, the 2020 RareLaunch® Workshops will 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 below for more information and to register for one or both sessions.

Forming a Foundation

Wednesday, December 2, 2020
1:00 – 5:00pm ET

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 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 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:

  • Finding community when your population is small – many nonprofits already have established online communities. How do you move forward from online into the physical world?
  • Fundraising without a 501(c)(3) – raising the money to support a nonprofit without the infrastructure of a nonprofit through online fundraising platforms, grants and other direct appeals
  • Learning about the nuts and bolts of nonprofit development – practical, pragmatic guidance on everything from articles of incorporation to bylaws
  • Developing your Board – finding and recruiting the members of your Board of Directors.
  • Growing your nonprofit – advice on recruiting and retaining volunteers

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

Register

Download Code of Conduct

Research Ready

Thursday, December 3, 2020
1:00 – 5:00pm ET

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 research ready so they can effectively support research and development when it begins. 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. Training from leading subject matter experts and nonprofit rare disease leaders who have delved into research will include:

  • Information and practical advice on establishing and funding a research program and natural history study, including dealing with research grants and the RFP granting and evaluation process
  • Technical support to provide a platform for disease specific registries and natural history studies
  • Clear, hands-on instruction on how to apply the concepts in the NCATS toolkit, with no prior database or scientific knowledge required
  • Collaboration with available scientists and research professionals to develop questions for inclusion in the patient registry to help in identifying the natural progression of the disease
  • Connection building with rare disease nonprofit leaders also new to research as well as those who have successfully navigated launching and maintaining a natural history study

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

Register

Download Code of Conduct