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Winner of Amgen Patients | Choices | Empowerment Competition Emerging Star of HealthCare Engagement Award
Mayo Clinic Award - LeftA winner of the Mayo Clinic iSpot Competition for Ideas that will Transform HealthcareMayo Clinic Award - R

Daniel’s Podcast for Pharma Marketing Blog

June 1st, 2009 Alexandra Carmichael Posted in Presentations, Random Company News No Comments »

Last week Daniel did a live podcast interview with John Mack for the Pharma Marketing Blog. He talks about how CureTogether got started and what patients are discovering on the site. Here’s the streaming audio below (about 15 minutes long).

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CureTogether Founders Caught on Video!

May 28th, 2009 Alexandra Carmichael Posted in Presentations, Random Company News 2 Comments »

At long last, we’re releasing recent videos of both of us speaking at the Quantified Self meetups.

Daniel gives a quick, early overview of CureTogether from December 2008, and Alexandra talks about who to trust for health information in March 2009.

Enjoy!

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Alexandra Carmichael on trust and health information sources from Kevin Kelly on Vimeo.

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Tim Ferriss and Kevin Rose on Open Source Clinical Trials

May 15th, 2009 Alexandra Carmichael Posted in Open Source Research, Presentations, Random Company News 1 Comment »

The second video in a series of two famous buddies discussing random things, in the clip below Tim and Kevin talk about music, open source clinical trials, CureTogether (about half way through), and their favorite knives. The open source health discussion is impressive, the rest is good fun. And check out Tim’s shoes!

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Random Episode Numero 2 from Glenn McElhose on Vimeo.

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How to Use Twitter to Spread Your Message

May 5th, 2009 Alexandra Carmichael Posted in Presentations, Random Company News 2 Comments »

Getting your message out is the biggest challenge in the crowded online space. Using Twitter has helped us at CureTogether (http://twitter.com/accarmichael), and it can help you too. Here’s how.
1. Follow conversations about your cause
At http://search.twitter.com, you can search for any keyword and see what everyone on Twitter is saying about it, live. It’s a great way to find people to follow that are interested in the same things you are.
2. Be a real-time presence
When you see a conversation about your cause, you can jump right in and be part of it. A live response is a great way to diffuse any negative comments about your organization, give thanks for positive ones, and put a real face and personality to your cause.
3. Build community and momentum
Twitter is a great platform for micro-blogging. It’s like releasing mini press releases every few minutes on anything that is relevant or happening at your organization. A good rule of thumb for building a large audience: follow people with similar interests, and they will follow you back. Use a service like http://tr.im to track how many people click on your posted links.
4. Stay up-to-date on news and events
With so many people posting articles, meetups, and cool ideas, Twitter is a great way to know the latest happenings in your field. You can easily keep up with what your competitors are doing and where your customers or members are hanging out.
5. Case Study: CureTogether
CureTogether presented at the Health 2.0 conference at the end of April in Boston. While Faren was doing her awesome demo on stage, I was answering the audience’s tweets live. Here are some sample comments from the conference about CureTogether:
- @1samadams: a massive tip of the well done hat to @accarmichael & curetogether – power to the peeps!
- @ePatientDave: Liking what I’m seeing of CureTogether demo. Such a difference when patients themselves design it!
- @swisshealth20 curetogether.com  demo – good statistical tools on Symptoms – Treatments – Causes – Related Conditions
- @DrGwenn: Cure together team scientists & patients of chronic dx.   now THAT’S 2.0! best of show?
And here’s a conversation that happened live, during the CureTogether demo:

- @Doctor_V: Examples of how curetogether has sped the research cycle for migraine?? If not, how would it??
- @accarmichael: @Doctor_V Research questions curetogether has opened up so far have been in comorbidities – what conditions occur with migraine?
- @Doctor_V: @accarmichael responded immediately to my question…thanks Alexandra
- @accarmichael: @Doctor_V You’re welcome! Thanks for the question :)


So Twitter is really an immediate, personal way of interacting with the community
of people you’re trying to reach with your message.

A great analysis of all the Health 2.0 Tweets was put together by Chris Hogg (@cwhogg).
He assembled his findings into a very cool slide presentation, below. Look for CureTogether
on slides 16 and 17.

How have you used Twitter to spread your message?
Are you inspired to give it a try?

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View more presentations from Chris Hogg.
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First Crowdsourced Book on Endometriosis Released

March 12th, 2009 Alexandra Carmichael Posted in Books, Health Tracking, Open Source Research, Perspective, Random Company News No Comments »

We are excited to announce today the release of “Endometriosis Heroes: 137 Women Share Their Experiences and Treatments.”
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What’s Inside?

137 women share stories, symptoms, and resources
Surprising data on co-morbid conditions
Detailed comments on treatments by real patients
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Please spread the word!

Blog or tweet http://www.curetogether.org/EHeroes

All proceeds from Endometriosis Heroes go to fund the endometriosis data community at CureTogether.org. A FREE PDF version is available if you invite 19 friends to CureTogether.

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What People Are Saying

Congrats – hands together for you and the amazing disruptive women at CureTogether!” Jen McCabe Gorman (@jenmccabegorman on Twitter)

Health 2.0 in action. CureTogether uses real patient stories to bring light to under-recognized condition Endometriosis.” Chris Hogg (@cwhogg on Twitter)

“With endometriosis, early diagnosis is important. I went from age 13 to age 23 undiagnosed. This is a common time lag for endo diagnosis. There should NOT be such a lag! Endometriosis awareness matters!!” — Jeanne, of Jeanne’s Endo Blog

“This is great. I am just starting to really appreciate what awesome power CureTogether can have.” — CureTogether member

To order your copy, visit http://curetogether.com/EHeroes/

Thank you for your support!

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UPDATE: Since the book release, we have received comments expressing concern about hysterectomy being rated highly as a treatment for endometriosis in the book. In order to balance this view, please read this post: http://endochick.wordpress.com/2009/03/23/jeannes-endo-blog-new-post-hysterectomy-story/

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Top 10 Conditions at CureTogether: Chronic, Women’s Health

March 4th, 2009 Alexandra Carmichael Posted in Condition Awareness, Random Company News, Research Findings 3 Comments »

What do the 10 most active conditions at CureTogether have in common? As you can see from the chart below, most of them are chronic conditions, and many affect more women than men.* To learn more about what these conditions are, read on below the chart.

picture-151Vulvodynia saw a big surge in data around the release of the crowdsourced book, Vulvodynia Heroes, compiled by CureTogether with input from 190 women. This chart also only captures a representative portion of the data recorded by people with these conditions.

So what are these conditions? While they are all common, some of them are not commonly known, so you may not have heard of them. Here’s a quick run-down:

Vulvodynia

Affects: 16% of women at some point in their lives. That’s 48 million women in the US alone.

What it is: A chronic condition characterized by pain and burning in the vulva without infection or other disease present.  Most commonly reported symptoms are burning, stinging, and/or rawness.  Some women describe the pain as “acid being poured on their skin” or as “constant knife-like pain.”

Source: NVA

Endometriosis

Affects: 5 – 10% of women.

What it is: A condition where tissue similar to the lining of the uterus is found elsewhere in the body. The most common symptom is pelvic pain, which for many women is severe and debilitating. An estimated 30-40% of women with endometriosis may not be able to have children.

Sources: endometriosis.org, Wikipedia

Migraine

Affects: 12 – 28% of people at some point in their lives, women 3 times more affected than men.

What it is: A neurological syndrome involving painful headaches, altered bodily experiences, and nausea. A typical migraine headache is unilateral and pulsating, lasting 4 to 72 hours. Estimated US medical costs for migraine are $1B a year, with lost productivity estimated at $13-17B a year.

Sources: NHF, Wikipedia

Depression

Affects: 8-12% of people at some point in their lives, women twice as affected as men.

What it is: A condition characterized by a pervasive low mood, low self-esteem, and loss of interest or pleasure in normally enjoyable activities. Depression often co-occurs with other conditions like anxiety, ADHD, pain disorders, and PTSD. It also commonly occurs after childbirth.

Source: Wikipedia

Anxiety

Affects: Anxiety disorders affect 16% of people at some point in their lives, women more than men.

What it is: A physiological and psychological state characterized by uneasiness, apprehension, or worry. While anxiety is a normal response to stress, anxiety disorders include panic disorder, OCD, post-traumatic stress disorder, generalized anxiety disorder, and phobias.

Sources: EMBH, NIMH, Wikipedia

Irritable Bowel Syndrome (IBS)

Affects: Up to 20% of the US population, women more affected than men.

What it is: A condition characterized most commonly by cramping, abdominal pain, bloating, constipation, and diarrhea. Most people can control their symptoms with diet, stress management, and prescribed medications. For some people, however, IBS can be disabling.

Source: NIDDK

Vulvar Vestibulitis

Affects: A subset of women who have vulvodynia (see above).

What it is: A chronic condition where pain is felt only in the vestibule, and only during or after contact. Burning sensations are the most common symptom and may be experienced with: sexual intercourse, tampon insertion, gynecologic examination, bicycle riding, or wearing tight pants.

Source: NVA

Insomnia

Affects: 21% of the US population, women 1.4 times more affected than men.

What it is: A symptom of a sleeping disorder characterized by persistent difficulty falling asleep or staying asleep. It is often followed by functional impairment while awake. Insomniacs may be unable to close their eyes or “rest their mind” for more than a few minutes at a time.

Source: Wikipedia

Acid Reflux

Affects: 5-7% of the global population daily, up to 1/3 of Americans.

What it is: A symptom of GERD (Gastroestrophageal Reflux Disease), along with heartburn, that occurs when the lining of the esophagus is exposed to acidic contents from the stomach if the lower esophageal sphincter does not seal off the esophagus from the stomach.

Source: IFFGD

Back pain

Affects: 80% of the US population at some point in their lives.

What it is: Pain in the back, often the lower back. Back pain is one of the most common reasons people go to the doctor or miss work. It can often be prevented or improved with proper body mechanics, regular exercise, chiropractic care, acupuncture, or massage.

Source: Mayo Clinic

*The data presented above reflect only the current population of members at CureTogether, which may not be representative of the larger population of global health citizens. It does serve as an interesting snapshot of the direction that CureTogether members are telling us to take in this great, crowdsourced research project.

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Presentation – Health 2.0 as a Research Vehicle

March 2nd, 2009 Alexandra Carmichael Posted in Random Company News No Comments »

Matthew Holt, of The Health Care Blog, recently presented to the National Committee on Vital and Health Statistics.
He featured CureTogether as part of the Health 2.0 movement and as a new source of health data for research. Slides from his presentation are below.
View more presentations from Matthew Holt. (tags: 2.0 health)
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First Crowdsourced Women’s Health Book Released

February 25th, 2009 Alexandra Carmichael Posted in Books, Open Source Research, Random Company News No Comments »

We are excited to announce today the release of “Vulvodynia Heroes: 190 Women Share Their Experiences and Treatments.”
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What’s Inside?

190 women share stories, symptoms, and triggers
Surprising data on co-morbid conditions
Detailed comments on treatments by real patients
.

Please spread the word!

Blog or tweet http://www.curetogether.org/VHeroes

All proceeds from Vulvodynia Heroes go to fund the vulvodynia data community at CureTogether.org. A FREE PDF version is available if you invite 19 friends to CureTogether.

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What People Are Saying

“The vulvodynia heroes are pioneers not just in investigating their own condition, but in developing self-cure practices that others can follow.” — Gary Wolf, Contributing Editor of Wired, Blogger at The Quantified Self

“Many other women who are suffering will find this very helpful and inspiring.” — Elizabeth Rummer, MSPT, Pelvic Health and Rehabilitation Center, San Francisco

“It’s awesome! I am so impressed with all the work you put into this subject and the insights you make. You’re my hero for being such a confident and constructive voice for vulvodynia. Kudos, kudos to you!” — CureTogether member

“LOVE the book and concept. I was hooked reading it top to bottom” — CureTogether member


To order your copy, visit http://curetogether.com/VHeroes/

Thank you for your support!

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First Crowdsourced Health Book to be Released

February 14th, 2009 Alexandra Carmichael Posted in Condition Awareness, Open Source Research, Random Company News, Research Findings 2 Comments »

vulvodynia-heroes-book-cover-smallCureTogether will soon release “Vulvodynia Heroes: 190 Women Share Their Experiences and Treatments”. It’s the first crowdsourced health condition book, about a condition that affects 16% of women at some point in their lives.

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The book has already received a lot of positive feedback from patients, doctors, health 2.0 enthusaists, and researchers. Here are some recent blog posts about it:

Dealing with Pain and Dysfunction: Vulvodynia Heroes

ScienceRoll: First crowdsourced health condition book by CureTogether

Servicing the Chassis: almost famous

Biogeekblog: crowdsourcing + patient empowerment

Tweet by Jen McCabe Gorman: “checking out first condition specific ‘experiential’ author project from CureTogether = awesome”

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More information about the book can be found here. Please help spread the word by blogging or tweeting this link: http://www.curetogether.org/VHeroes

Thank you and Happy V-Day!

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207 Conditions Now Being Studied at CureTogether

February 10th, 2009 Alexandra Carmichael Posted in Random Company News 1 Comment »

In the past 7 months, people visiting CureTogether have added over 200 conditions to this crowdsourced research project. We started out last July with 3 conditions – Vulvodynia, Endometriosis, and Migraine. The conditions today are listed below. Anyone can add their condition or update a condition someone else has added.

Piece by piece people are assembling the puzzle, and eventually the picture we see will lead to a better understanding of these often debilitating conditions. Thank you to everyone who has added their piece.

Please help spread the word so more people can be helped and can add to building the bigger picture!

A

Acid Reflux, Acne, Acute Hormonal Imbalance, Adenomyosis, ADHD, Adhesions, Adrenal Fatigue,
Aging, Allergies, Alopecia, ALS, Alzheimer’s Disease, Anal Fissures, Anemia, Anger, Angular Cheilitis,
Ankylosing spondylitis
, Anorexia, Anxiety, Arnold Chiari Malformation, Arthritic Hips, Arthritis,
Asperger’s Syndrome, Aspirin Allergy, Asthma, Ataxia, Atherosclerosis, Atypical Trigeminal Neuralgia,
Auditory Processing Disorders, Autism, Avoidant Personality Disorder

B

Back pain, baldness, Binge Eating, Bipolar Disorder, Bladder Infection, Blepharitis,
Body Image Distortion
, Bodyweight and bodyfat reduction, Breast Cancer, Bronchitis, Bulimia,
Bursitis

C

Candidiasis, Cardiovascular Disease, Carpal Tunnel syndrome, Cataracts, Celiac Disease,
Central Pain Syndrome
, Cerebral aneurysm, Childhood Glaucoma, Chronic Fatigue Syndrome,
Chronic Myelogenous Leukemia, Chronic obstructive pulmonary disease, Cirrhosis,
Cluster Headaches, Common Cold, Complex Partial Seizures, Crohn’s Disease, Cushing’s Disease

D

Depression, Diabetes – Type 1, Diabetes – Type 2, Diabetic Retinopathy, Discoid Lupus Erthematosus,
Dupuytren’s contracture
, Dysmenorrhea, Dysthymia

E

Eating Disorders, Eczema, edema, Endometriosis, Erectile dysfunction, Erythema, Essential Tremor,
Eye Floaters

F

Fecal Incontinence, Fibromyalgia, Frostbite

G

Gallstones, Gastric Hyperacidity, Gastroparesis, Gilbert’s Syndrome, Glaucoma, Glioma, Gout

H

Halitosis, Hammertoe, Hashimoto’s Disease, Hearing Loss, Heart Murmur, Heartburn,
Hemicrania Continua
, Herpes, High Cholesterol, Human Immunodeficiency Virus,
Human Papillomavirus
, Hyperhydrosis, Hypertension, Hyperthyroidism, Hypoglycemia,
Hypogonadism
, Hypotension, Hypothyroidism

I

Infertility, Insomnia, Insulin resistance, Interstitial Cystitis, Irregular Heart Beat,
Irritable Bowel Syndrome

K

Keratoconus, Keratosis Pilaris, Kidney Disease, Kidney Stones

L

Lactose Intolerance, Leg Swelling, Leukemia, Lichen Planus, Liver Disease, Lyme disease,
Lymphedema, Lymphoma

M

Macular Degeneration, Mastocytosis, MCSS, Melanoma , Meniere’s Disease,
Methylmalonic Acidemia
, Migraine, Mitral Valve Prolapse, Multiple Sclerosis, Mycosis

N

Neck Pain, Neuralgia, Neurinoma, Neuroblastoma, Neurogenic Bladder,
Neurological Problems And Chronic Pain, Neuropathy, Neutropenia, Nickel Allergy, Night Cramps

O

Obesity, Obsessive-compulsive disorder, Obstructive sleep apnea, Occipital Neuritis,
Onion Intolerance, Osteoporosis

P

pain during sex, Palindromic Rheumatism, Papulopustular Rosacea, Parietaria allergy,
Parkinson’s Disease
, PCOS, Pelvic Congestion Syndrome, Periodic Limb Movement Disorder,
PMS, Polycythemia, Polymyalgia, Polyposis, Prostate Cancer, Prostatitis, Psoriasis,
Psoriatic arthritis, PTSD, Pudendal Neuralgia, Pulmonary Hypertension

R

Raynaud’s Disease, Reactive Arthritis, Restless Legs Syndrome, Retinal detachment,
Rheumatoid Arthritis
, Rosacea

S

Sacroiliitis, Sarcoidosis, Sciatica, Scleroderma, Seborrheic Dermatitis , Seizure Disorder,
Sjogren’s Syndrome
, Social Anxiety Disorder, Spinal Stenosis, Spinocerebellar Ataxia Type6 (SCA 6),
Swollen Lips, Syphilis, Systemic Lupus

T

Thoracic Disc Herniation, Tinnitus, TMJ Disorder, Tobacco addiction

U

Ulcerative colitis, Underarm Paresthesia, Ureaplasma, Urethral Stricture, Urinary Incontinence,
Urinary Tract Infections
, Urticaria, Uterovaginal Prolapse

V

Vaginal Cancer, Varicose Veins, Viral Conjunctivitis, Vitamin D Deficiency, Vitiligo,
Vulvar Vestibulitis, Vulvodynia

W

Whole Body Chronic Pain, William’s Syndrome

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