Many of you probably know that we list the panels and counts on the website. You can go to https://rarepatientvoice.com/for-researchers/patient-panels. We list the counts for over 300 conditions there. But what if you are looking for a patient group that you don’t see? Should you assume we don’t have them?
No! Please ask. We have many more diseases/conditions. We classify them under “other” and we’ve been busy reclassifying them. But you won’t see them yet on our website. Please ask us, we’ll let you know. The other day we were asked for Usher Syndrome. This condition results in partial or total hearing loss and vision loss that worsens over time. We didn’t list it on our site, but we have 6 patients and caregivers. And we’re happy to work to grow that panel.
Also, we want to know what you need. Not only might we have some, but by asking us we learn what you need, and we’ll want to find more patients and caregivers in that disease category. So, we’ll research potential advocacy groups, reach out to them, find if they have patient events we can attend, and invite them to take part in our patient referral program. We won’t know what you need if you don’t ask! So please ask!