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Susannah Fox

I help people navigate health and technology.

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Rare Disease

Chasing cures

September 10, 2019 By Susannah Fox 7 Comments

CHASING MY CURE book cover

Years ago, I met a mom of a child with a rare disease who matter-of-factly shared her story, which included as many twists and close calls as any blockbuster summer movie. I marveled at her heroism and she said no, she rejects that description. “I’m not a hero,” she insisted. “I’m a typical mom. You […]

Filed Under: e-patient stories, key people, positive patterns Tagged With: Abby Norman, Afternoon Napper, Bon Ku, Dana Lewis, David Fajgenbaum, Doug Lindsay, Rare Disease, rare diseases, Sharon Terry, Terry Jo Bichell

A helping hand, just in time

August 26, 2019 By Susannah Fox 5 Comments

D-ABNT by Benedikt Lang on Flickr - cropped

Some years ago a few colleagues and I got stuck at Logan Airport and we started telling stories to pass the time. One tale has come back to me over and over again, particularly as I cared for my dad during his last year of life, because it reminded me to be open to the possibility […]

Filed Under: peer-to-peer health care Tagged With: Francis Collins, NIH, Rare Disease, rare diseases, Sharon Terry

Update: A Seat at the Table

June 1, 2019 By Susannah Fox 7 Comments

Fortifications at Colonial Willamsburg by Kate Mereand-Sinha

Last November I attended FAREcon, an annual event devoted to food allergy research and education. I published my notes in a long, deep-dive post that included one short section on pending litigation (below). I’m thrilled to report a positive update: “A federal appeals court Friday ruled against the tavern that refused to let the child […]

Filed Under: key people, policy issues Tagged With: disability, food allergy, Rare Disease

Rare but not alone

March 11, 2019 By Susannah Fox 1 Comment

Between the flags by Nicolas Alejandro on Flickr

Ashley Eakin, a filmmaker, is being brave and showing her real self online. She does it on behalf of the kids who share her rare condition so they can see themselves, in her image — a beautiful example of how the internet can be a bridge to hope and inclusion. Watch: When she mentions in […]

Filed Under: beauty and wonder, peer-to-peer health care Tagged With: Ashley Eakin, Burt Minow, Moebius Syndrome, peer-to-peer healthcare, Rare Disease, rare diseases

Rare Disease Day 2019

February 28, 2019 By Susannah Fox 3 Comments

Today is Rare Disease Day, when we lift up the stories of the 300 million people who live with more than 6,000 rare conditions. This year’s theme focuses on bridging health and social care, alleviating the heavy burden on people who coordinate medical, social, and support services for themselves and their loved ones. The National […]

Filed Under: patient networks, peer-to-peer health care, research issues Tagged With: Rare Disease

A deep dive into food allergy research and education

November 8, 2018 By Susannah Fox 21 Comments

Cartoon: One woman says, "Food allergies are all in your head." Other woman replies, "No, in my head I'm punching you in the face."

Longtime followers of this blog know I believe in the power of peers, particularly among people living with rare conditions, and may also know that I am a food-allergy mom. This past weekend I had the chance to attend the annual conference for my rare community, FAREcon, and drink from the peer advice well. Warning: This […]

Filed Under: patient networks, peer-to-peer health care, research issues Tagged With: food allergy, Rare Disease

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Recent Comments

  • Lisa Suennen on Wow! How? Community: “That is a beautiful story. Kids always have the best answers” Aug 29, 11:31
  • Susannah Fox on Lessons learned about hospice care: “Zoe, thank you for the unvarnished comment! We need to go into end of life with our eyes open in…” Aug 5, 14:20
  • Zoe on Lessons learned about hospice care: “I despise home hospice and the entire industry can kiss my ass. I was duped into caring for my dying…” Aug 5, 03:45

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