We're delighted to share our first ever impact map for the work done in this first quarter of 2022! We're a group of people all around the world working to improve the lives of persons living with overlooked diseases, in particular the rare, undiagnosed, and neglected diseases of the world. This organization was founded by Helen W. Hernandez in 2018 and the majority of time since then has been spent meeting and listening to members of the communities we now actively serve. This quarter she worked for individuals (11%), patient-led research organizations (42%), and companies (47%).
Impact Map - Q1 2022
What we do
If you find yourself studying the science of your rare disease as if you'll be taking an exam, you don't have to do it alone. Schedule an appointment and let's find and digest the best resources possible for your particular interest. If you're new to your diagnosis and are overwhelmed by information, let us help point you to the resources you're looking for. If you've exhausted the beginner's level content about your disease but are intimidated by the jargon in deeper science, let's dive in together! If you're looking for insights in the peer-reviewed science about or tangential to your disease(s) to then take to your trained medical providers, we can help you find and critically evaluate these papers. To build a more inclusive program, we have a 30% pro bono commitment for work with individuals.
For Patient Organizations
We can provide targeted tutoring for your patient population, explore the scientific landscape looking for ways to fuel the research forward, or simply execute on an initiative you already envision. Understanding that each patient organization has a different story and that many are run entirely by volunteers, we have a 30% pro bono commitment for this work as well.
For companies who align with our mission, we can provide literature reviews, white papers, and/or scientific consulting.
For Whole Communities
We launch specific initiatives to address challenges and gaps in a field in a highly collaborative fashion.
At the end of Q1 we launched the R69 Initiative www.R69initiative.org to reduce the duration of the diagnostic odyssey for persons living with a rare disease. Stay tuned for 2 more initiatives that will be launching shortly!
Looking forward to hearing from you, please reach out over email firstname.lastname@example.org and/or schedule a time to meet: