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How can I find others with the same rare condition that I have?

5 Answers
Last Updated: 06/18/2021 at 9:35pm
1 Tip to Feel Better
United States
Moderated by

Danielle Gonzales, PsyD


Hello! My name is Dani, I am a Psychologist and registered Psych Assistant. I have a passion for helping a different types of clients from all diverse backgrounds!

Top Rated Answers
April 23rd, 2019 6:46pm
this is a great question and i'm so glad that this has been asked! i have experience with this very thing. one thing that you can do is search for the name of your condition in facebook and then click on the "groups" tab. you can join those particular groups and be able to connect, learn and not feel alone. i know what it is like to have a rare condition and feel completely alone, and i hope that my suggestion will be helpful for you so that you can get some support. i wish you the best!
February 28th, 2019 9:17pm
A lot of informational websites have references to Support Groups at the bottom of their pages, along with the other references. A simple google search may help you find places to connect you to other people who share your condition. I tried but most people haven't been on in four years, for some reason, so it didn't work for me. Facebook Support Groups are good, they are the most helpful that I have found. Meantime, we at 7cups are here to support you. We may not know everything you're going through, but we'll gladly listen! :) You are not alone.
April 6th, 2019 9:01pm
When it comes to rare conditions, there are usually charities involved in creating awareness and offering advice to people with the condition. Those websites sometimes have forums or events which can connect you with other people who have the same condition. You can also look on social media, such a Facebook, for groups related to your condition. I am a part of Facebook groups for my health conditions and it is comforting to know I have a private space to rant with others who understand me. We also have a forum community dedicated to disability support, you might find someone else there with the same condition?
May 10th, 2019 3:28am
I know the NIH website has some links to ways to find various support groups. It is also possible sometimes it check with your [local aka nearest] teaching medical school hospital system, for me that is UPenn/Penn Medicine in Philadelphia, sometimes the various specialists know support groups or clinical trials. That's what I'm doing for my NON-diabetic Gastroparesis and McCune-Albright's Syndrome, at least. I secured an appointment in late July with one of the medical geneticists with Penn Medicine's Translational Medicine and Human Genetics doctors; both so that I can have a specialist monitor me with all my various disorders, figure out what is related to the mutated genetics and what isn't but also to see if there are ways to find support or treatments.
June 18th, 2021 9:35pm
Searching for a group on google or facebook based on the name of the condition may be a good starting place, but if it's quite rare there may not be a support group. I have multiple rare conditions, and I haven't been able to find groups for all of them. If there's no specific support group, looking for a group of a related condition or a broader group may help. For example, someone with a rare neurological condition may find a group for those with Multiple Sclerosis is helpful and they may even come across others with the same rare condition within it. They could also seek out a neurological condition support group. You can also ask at the clinic you go to, the rare blood disorder clinic I use wanted me to be able to connect with others.