Maybe you want to host a potluck for people with rare diseases in your area or maybe you’d like to focus on your/your loved one’s specific disease. Or maybe it is something else you’d like to host. Maybe you’re not sure what you want to do. You can talk it through with us. SparkHope can help with (not an exhaustive list):

A quick needs assessment would include: 
Where is everyone

  • Can they get to your proposed gathering? 
  • Will you need to incorporate travel time or travel stipends into your planning?
  • How many people can you reasonable plan for?

What kind of resources do you have:

  • Money
  • Time
  • Donated goods and services
  • Location
  • Volunteers
  • Etc.

We can help you spread the word through social media and press packets
We can get you information from some of really great national rare disease organizations we have or your patient organization as needed

We can help you find funds if your event needs it (our founder worked in development)
We can help you plan (evolving in nature) on ways to continue connecting
And more

This probably sounds like party planning and it is to a degree. The heart of SparkHope is building connections among and between people affected by rare disease. Let’s take action to improve our health and quality of life as we work for a cure. If your lucky you’ve felt the power of connecting, but there is research behind the importance of connecting for everyone (check out what they have to say about it at the Stanford Center for Compassion and Altruism Research and Education) and people with rare diseases (check out this one about Familial chylomicronemia syndrome) A journal article by Bogart & Irvin (2017) studied patients with rare diseases and found they had a reduced quality of life which was, in part, attributable to a lack of social support. We can do that for each other…be strong and caring supports.