6 Ways Patient Advocates Can Help People With Rare Conditions


I feel patient advocates and patient support groups play a vital but under-resourced contribution to the needs of patients with rare conditions.

With the global use of the internet and social media, patients have the capability to access information and resources that 20 years ago would have been almost impossible.

Patients can now access information about their condition and talk in real time with patients around the world. This has helped patients with rare conditions to be able to come together and not feel as isolated as they once were.

There still seems some reluctance in the medical community when patients come to them armed with information they got from the internet. While it’s probably not a good idea for doctors’ waiting rooms to be all filled with patients who made self-diagnoses through a health website, there’s still room for doctors to listen to the concerns of patients with undiagnosed rare conditions.

With my condition, Kallmann syndrome, and its major symptom of absent puberty, early diagnosis and treatment can make all the difference in the well-being of the patient. I was dismissed as being as a “late bloomer” into my early 20’s before a chance encounter led to the correct diagnosis. If I had access to information about my condition back then that’s available now, perhaps I could’ve been diagnosed and treated years earlier.

The benefits of patient advocates and support groups can be enormous, especially for people with the rare conditions, since they bring patients from all over the world together.

In my experience, it’s not unusual for a patient advocate with a rare condition to have met and talked to far more patients with their condition than some doctors ever will. Patient advocates can help with communication between health care professionals and fellow patients and help patients feel like they have more control over their condition.

Here are six more ways patient advocates can help people with rare conditions:

1. Patient advocates can advise on the best questions to ask doctors during appointments when time is limited.

2. Patient advocates can advise patients to ask their doctors about different forms of treatment that may be possible. This can be especially useful with doctors who have a limited experience of treating patients with your condition.

3. Patient advocates can help decipher test results or explain the condition in more detail since the time the patient has with the doctor or nurse can be limited.

4. Patient advocates can also help in patient surveys or clinical trials where medical experts want to reach out or contact as many patients as possible.

5. Patient advocates can help medical experts develop web-based information sources to help fellow patients. Using direct input from patients, the experts will know what question patients ask the most and the kind of information they’re seeking.

6. Patient advocates can help patients feel like they’re part of a group. Even if patients never actively participate in a patient group, just belonging to the group and knowing it’s there can help.

We want to hear your story. Become a Mighty contributor here.

Lead photo by Thinkstock Images


Find this story helpful? Share it with someone you care about.