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Chronic illness advocacy
Our voice is rare. Not invisible.
Bringing visibility, resources and community to people living with chronic conditions and rare diseases. Whatever your diagnosis, you should not have to walk this on your own.
Take your time here. Nothing on this page is going anywhere.
True bravery rarely announces itself with a roar; more often, it is a quiet, invisible daily choice.Leeann Hoe, founder
What we do
Every voice matters, and all diseases deserve support.
It should not matter whether a diagnosis is labeled rare or common. What matters is being heard, believed and seen.
Plain language
What the words on your chart and your paperwork actually mean, without the jargon.
Unconditional support
No gatekeeping by diagnosis. Rare or common, you belong here.
Our stories
Lived experience, told by the people living it, including Leeann’s own.
Plain language
The words nobody explains to you.
Appointments move fast and the paperwork moves faster. Here is what some of it actually means.
These are general explanations to help you follow a conversation, not medical advice. Your own clinician knows your case.
Flare
A period when symptoms get worse for a while before settling again. Flares can come with no warning and no obvious cause.
Comorbidity
A second condition that exists alongside the first. Many people with chronic illness carry several at once.
Prior authorization
When an insurer requires approval before it will cover a medication, test or procedure your clinician has already recommended.
Differential diagnosis
The list of conditions a clinician is weighing before settling on an answer. It is why testing can take so long.
Remission
A period with few or no symptoms. It does not always mean the condition has gone, and it can come and go.
The book
A book built out of real stories.
Leeann Hoe and a co author are gathering stories from people who live with chronic and rare conditions. It is early, and it is being written carefully.
- Dedication, author’s note and chapter outline are written
- Story prompts are being prepared for contributors
- Contributors are welcome now, at your own pace
Get involved
However much you have to give, that is enough.
We are calling on neighbors, educators, healthcare workers and local leaders to move from passive awareness to real advocacy.
- Share your storyYour experience may be the thing that makes another person feel less alone.
- Help a local familyPractical help for people in our community who are in the thick of it.
- Spread the wordTell a neighbor, a teacher, a nurse, a local leader. Awareness on its own is not enough.
- Future eventsA 5K is on the horizon. Tell us if you want to be there when it happens.
Give yourself grace. This is a marathon, and it is heavy.
If you are navigating this right now, or advocating for someone who is, you do not have to do it alone.