Ilana Jacqueline

(Editor) Ilana Jacqueline is the Managing Editor of The RARE Daily at Global Genes. She assists the patient community in getting their stories heard and shared so that they can connect, educate and inspire. Ms. Jacqueline has been reporting on health and other issues both online and in print for the last ten years. She has personal experience as a rare disease patient with Primary Immune Deficiency Disease and keeps a blog discussing her experiences at www.letsfeelbetter.com.

In the past, Ms. Jacqueline has written for The Palm Beach PostThe Sun-SentinelThe Huffington PostCosmopolitanMarie Claire, Everyday HealthAOL, and her first book, Overcoming Chronic Illness (Demos Health) will hit shelves in August 2015.

Ilana Jacqueline is a South Florida native who has never seen snow, decorates about three months too early for the holidays and is torn over whether or not she wants to have children…or maybe just more poodles?

You can see more of her work at The Huffington Post, Cosmopolitan and, of course, on her blog Let’s Feel Better.

Want to reach out? You can email Ilana at IlanaJ@Rareproject.org.

Designing Effective Rare Disease Registries
by Raymond A. Huml, MS, DVM, RAC and Margaret Dean, MBA, Quintiles MS at DDDmag.com   Rare disease research was once a neglected aspect of… Continue Reading
Emergency Room Chaos: 8 Relatable Moments You Know All Too Well
Many rare disease patients feel overwhelmed by the all-too-common emergency room visit that ends in misunderstanding.  In response to this… Continue Reading
RARECast: Stem Cell Gene Therapy Restores Immune System in Kids with SCID
Researchers at UCLA have developed a stem cell gene therapy treatment for children born with the rare, life-threatening condition… Continue Reading
One Patient Explains What Complex Regional Pain Syndrome Felt Like For Her
From The Age by Melissa Cunningham Chantelle Baxter was in so much pain it felt like her entire body had been dipped in acid. In her most… Continue Reading
RDR: Delayed Diagnosis a Significant Stressor for Rare Disease Parents
From the Rare Disease Report A study published in Orphanet Journal of Rare Disorders shows that many parents are not content with the… Continue Reading
Boston_Marathon
Rare Disease Patient and Marathon Man, 67, Keeps Running
Bennett Beach, 67, is a man on the run. On April 17, the resident of Bethesda, Md., will participate in his 50th consecutive Boston… Continue Reading
Invitae Creating Patient Insights Network (PIN) to Help Share Health Data
Last week, Invitae announced the launch of the Invitae Patient Insights Network℠ (PIN), an opt-in, patient-centered network designed to… Continue Reading
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