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Top Lupus Patient Experts

Gabrielle

Founder, Lupus Sistas/Lupus Advocate/Writer/Former Journalist

Gabrielle
Autoimmune Diseases
Chronic Illness
Fitness
Lupus
Rheumatoid Arthritis
Women's Health
Blogger
Copywriter
Editor
Marketing
Proofreader
Public Relations
Reporter
Social Media
Orlando, FL
available less than 10 hours/week

I am a former news journalist, turned lupus advocate who uses her candid experiences of living with lupus, chronic illness and an invisible disease to spread awareness, particularly among underserved populations. I have the unique perspective of a patient advocate and the skills of a professional journalist and copywriter to see the whole story and public relations angles. I'm also able to make complex content digestible for the general public. I've provided lupus education through many platforms, including legislatively and through social media and radio work. I am interested in connecting with and creating effective content for healthcare companies that are looking to include an authentic, patient voice at the table.
Advocacy work includes:
Feature by the US Department of Health and Human Services’ Office on Women’s Health to highlight Lupus.
2016 WEGO Health Activist Hero Nominee
2017 Lupus Research Alliance Patient Advocate for Annual Advocacy and Hill Day in D.C.

Hetlena

The Lupus Liar / Living Your Best Life While Living with Lupus

Hetlena
Alternative Medicine
Anemia
Arthritis
Autoimmune Diseases
Caregiving
CFS (Chronic Fatigue Syndrome)
Chronic Illness
Lupus
Mental Health
Women's Health
Blogger
Clinical Research
Consumer Engagement
Copywriter
Editor
Event Planner
Executive Coach
Health Data Tracking
Influencer Marketing
Online Moderation
Peer Support
Program Development
Social Media
Social Networking
4 More 4 Less
Columbia, SC
available 21-30 hours/week

Hetlena has been integral in bringing lupus to the forefront of awareness in South Carolina. Her main goal is to raise awareness of and advocacy for lupus patients, like herself, in South Carolina. Hetlena now serves as the Chief Volunteer Officer of the newly transitioned LFA South Carolina Community Partner (LFASCCP). She leads and coordinates the training of support group leaders in the state of South Carolina. Her work with lupus sparked a partnership with the Institute for Partnership to Eliminate Health Disparities (IPEHD) Arnold School of Public Health of the University of South Carolina to spread the word on the development of a South Carolina Lupus Registry. Hetlena’s flagship company, The Lupus Liar, allows her to educate, advocate and raise awareness about lupus as a highly sought after speaker, critically acclaimed author, coach, presenter and trainer. She is well-versed in data management, community awareness strategies, and lupus education presentations.

Tiffany

Healthcare Advocacy and Social Media Expert

Tiffany
Anxiety
Autoimmune Diseases
Chronic Illness
Depression
Fibromyalgia
Lupus
Consumer Engagement
Consumer Insights
Digital Marketing
Event Planner
Influencer Marketing
Online Moderation
Peer Support
Product & App Testing
Product Development
Program Development
Project Management
Social Media
Social Networking
Strategy
4 More 4 Less
Staten Island, NY
available 10-20 hours/week

Encourages awareness and utilizes social media to help educate patients, providers, physicians, pharma, and key healthcare stakeholders on health, the e-patient movement, participatory medicine, healthcare social media, and lupus. Community manager for more than five successful social media outlets.

Charlotta

Patient Expert Consultant, Founder and Advocate

Charlotta
Arrhythmia
Arthritis
Autoimmune Diseases
Bone Diseases
Cataract
Chronic Illness
Food Allergy
Heart Disease
Kidney Disease
Liver Diseases
Lupus
Pain (Chronic Pain, Joint Pain, Back Pain)
Skin Health/Diseases
Thyroid Diseases
4 More 4 Less
Consumer Engagement
Consumer Insights
Event Planner
Health Data Tracking
Peer Support
Social Media
Social Networking
Brooklyn, NY
available 40+ hours/week

I'm an Patient Advocate and a Patient Expert. I work with patients. I volunteer to help patients. I represent patients through advocacy work both locally and on Capital Hill. I'm the Founder and CEO of a patient organization. Most importantly I am a patient.

I represent patientsgive the patient perspective and ensure that the patient voice is taken into consideration during the entire product development process. I participate in patient required Consumer Reviews, Patient roundtables, advisory boards. I'm

Alison

Empowering Patients, LLC

Alison
Anxiety
Autoimmune Diseases
Crohn's Disease
Depression
IBD (Inflammatory Bowel Disease)
Irritable Bowel Syndrome
Lupus
Pain (Chronic Pain, Joint Pain, Back Pain)
Ulcerative Colitis
Women's Health
Blogger
Marketing
Online Moderation
Peer Support
Social Media
Social Networking
Cincinnati, OH
available 10-20 hours/week

I work in autoimmune patient advocacy, primarily with Inflammatory Bowel Disease (IBD) and ostomies. I'm available to work on different social media platforms and on many different levels.

Greta

Experienced in Researching and Writing Content about Health Related Topics

Greta
Addison's Disease
ADHD (Attention Deficit/Hyperactivity Disorder)
Aging/Senior Health
ALS (Amyotrophic Lateral Sclerosis)
Alternative Medicine
Alzheimer's Disease
Anemia
Anxiety
Arthritis
Autoimmune Diseases
Blood Disorders
Breast Cancer
Cancer
Caregiving
Carpal Tunnel Syndrome
Cholesterol
Chronic Illness
Colorectal (Colon) Cancer
Crohn's Disease
Developmental Disabilities
Diabetes
Disabilities
Fibromyalgia
Heart Disease
Heart Health
Hemophilia
Learning Disorders
Lupus
Migraine
Non-Hodgkin's Lymphoma
Other
Parkinson's Disease
Rare Diseases
Restless Legs Syndrome
Stroke
Thyroid Diseases
26 More 26 Less
Blogger
Consumer Insights
Copywriter
Influencer Marketing
Marketing
Peer Support
Proofreader
Reporter
Social Media
Social Networking
Green Sea, SC
available 10-20 hours/week

I am a freelance journalist specializing in researching and writing about health related issues. My interest in this field began when I was diagnosed with a little known chronic blood disorder (ITP) and had to do the research to find out exactly what I had. I am also a full-time caregiver for my disabled husband and have interviewed health professionals and other caregivers to succeed at this task.

I have used my skill at searching out answers to write articles for newspapers, blogs, websites, etc on various health related topics.

Ashley

Arthritis Ashley: Patient Expert, Public Speaker, Medical Reporter & Marketing Consultant

Ashley
Alternative Medicine
Arthritis
Autoimmune Diseases
Carcinoid Syndrome
Celiac Disease
Dystonia
Fitness
Food Allergy
Health Public Policy
Lupus
Migraine
Pain (Chronic Pain, Joint Pain, Back Pain)
Postural Orthostatic Tachycardia Syndrome
Rheumatoid Arthritis
Sjogren's Syndrome
5 More 5 Less
Blogger
Consumer Engagement
Consumer Insights
Copywriter
Digital Marketing
Editor
Event Planner
Influencer Marketing
Marketing
Online Moderation
Other
Peer Support
Product & App Testing
Product Development
Program Development
Proofreader
Public Relations
Reporter
Social Media
Social Networking
10 More 10 Less
Pittsburgh, PA
available 40+ hours/week

My name is Ashley Boynes-Shuck. I live with several autoimmune diseases and musculoskeletal disorders, in addition to chronic migraine syndrome. I began my work as patient advocate and patient leader about a decade ago as a Community Development Director for the Arthritis Foundation. Since then, I've cultivated an online persona called Arthritis Ashley, a Facebook community for young people with arthritis called Rheum to Grow, and I have amassed 40,000+ followers across all of my social networks. I have authored 3 published books, two of which are health memoirs, and am a certified health coach. I've consulted with pharmaceutical companies on marketing and advertising. I have served as a Community Manager and Content Director for an arthritis-friendly pharma website. And Oprah Winfrey has even tweeted me about my advocacy work! Currently, I consult with the Autoimmune Registry working on patient engagement and social media efforts, and I am an arthritis reporter for Healthline.com.

Jennifer

Patient Expert and Advocate in Lupus, APS, Sjogrens, Raynauds, Migraines, Myasthenia Gravis and Mental Illness

Jennifer
Chronic Illness
Fibromyalgia
Lupus
Migraine
Sjogren's Syndrome
Blogger
Social Media
available 21-30 hours/week

I have been a patient expert in Lupus, APS, Factor V Leiden, Sjogrens and Raynauds since 2004. I was diagnosed with intractable migraines in 2015. I was diagnosed with Myasthenia Gravis in 2016, and am quickly becoming a patient expert in that as well. I have been a patient advocate and expert in mental illness since 2002, as my children battled severe childhood mental illnesses - bipolar disorder, schizophrenia, obsessive compulsive disorder, ADHD, and generalized anxiety. Though my children are now teens and young adults, I still advocate for their mental health today.

I am an expert on chronic pain, and can speak to chronic pain alternatives, such as Topamax and Ketamine.

Carlene

Patient Advocate, Healthcare Community Manager

Carlene
Lupus
Rare Diseases
Clinical Research
Project Management
Richmond, VA
available 21-30 hours/week

A Lupus and Raynaud's patient with academic training in the physical (biochemistry, human genetics) and social sciences. Healthcare Community Manager and co-host of an online Twitter chat that provides various resources for members of the Lupus community. I have worked with legislators, patients, community leaders, and health technology experts toward improving patient care and ensuring that patients (as prominent stakeholders) are present in every step of the healthcare process.

Tracy

Rare Disease EPatient Experienced in Managed Healthcare, Rare Diseases and Clinical Research Advisor.

Tracy
Acne
Acromegaly
Addison's Disease
ADHD (Attention Deficit/Hyperactivity Disorder)
Aging/Senior Health
ALS (Amyotrophic Lateral Sclerosis)
Alternative Medicine
Alzheimer's Disease
Anemia
Aneurysms
Aphasia
Arrhythmia
Arthritis
Asthma
Atrial Fibrillation
Autism Spectrum Disorders
Autoimmune Diseases
Beta Thallasemia
Birth Defects
Blood Disorders
Bone Diseases
Brain Health
Breast Cancer
Cancer
Carcinoid Syndrome
Caregiving
Celiac Disease
Cerebral Palsy
Chronic Illness
Clinical Trials
Colorectal (Colon) Cancer
Complex Regional Pain Syndrome
COPD (Chronic Obstructive Pulmonary Disease)
Crohn's Disease
Cushing's Disease
Cystic Fibrosis
Dementia
Diabetes
Disabilities
Duchenne Muscular Dystrophy
Dystonia
Ehlers Danlos Syndrome
Epilepsy
Eye Health/Diseases
Fibromyalgia
Fitness
Food Allergy
Gastrointestinal Diseases
Gaucher's Disease
GIST
Health Public Policy
Healthy Living
Hearing Disorders and Deafness
Heart Disease
Heart Health
Hemophilia
Hepatitis
HIV/AIDS
Irritable Bowel Syndrome
Liver Diseases
Lupus
Lyme Disease
Migraine
Multiple Sclerosis
Muscular Dystrophy
Myelo Dysplastic Syndrome
Neuromuscular Disorders
Nutrition
Oral Health
Organ Transplantation
Osteoporosis
Pain (Chronic Pain, Joint Pain, Back Pain)
Pancreatic Neuroendocrine Tumors
Parenting and Family Health
Parkinson's Disease
Polycystic Ovarian Syndrome
Post-Traumatic Stress Disorder
Postural Orthostatic Tachycardia Syndrome
Primary Biliary Cholangitis
Psoriasis
Psoriatic Arthritis
Pulmonary Fibrosis
Rare Diseases
Reflex Sympathetic Dystrophy
Restless Legs Syndrome
Rheumatoid Arthritis
Seizures
Severe Allergy
Sexual Health
Sickle Cell Disease
Sjogren's Syndrome
Skin Health/Diseases
Sleep and Sleep Disorders
Stroke
Thyroid Diseases
Tuberous Sclerosis Complex
Ulcerative Colitis
Wegener's Granulomatosis
Women's Health
89 More 89 Less
Blogger
Business Development
Clinical Research
Consumer Engagement
Consumer Insights
Health Data Tracking
Human Resources
Mobile App Development
Online Moderation
Peer Support
Program Development
Project Management
Social Media
Social Networking
Strategy
Usability Testing
6 More 6 Less
Chesterfield, VA
available 31-40 hours/week

I became ill in 2001 and over 4 years saw 51 specialists that could not diagnose my illness. I was handed a Medline study from Christopher Reeves' Neurologist and was told to find the surgeon that performed that study. It lead me to Pittsburgh & Dr Peter Jannetta, Godfather of Modern Neurosurgery. He saved me from becoming a quadriplegic & worse. I never imagined I would develop multiple Rare Diseases at 31 yrs old, I had to learn to live a new limited life and the only way to start was with knowledge, then with helping others when I was well enough, and I have never stopped. I am a Leader in the Rare Disease Community, a Healthcare Activist, and Lobbyist. I have been fortunate to work with 1000's of Rare Disease Patients, Health and Disease Organizations and Foundations, Healthcare Stakeholders, and learned from them all. Now I try and improve Healthcare one day and project at a time.


Bonnie

Bonnie Feldman DDS, MBA. Chief Collaboration Officer at DrBonnie360/Your Autoimmunity Connection.

Bonnie
Autoimmune Diseases
Celiac Disease
CFS (Chronic Fatigue Syndrome)
Chronic Illness
Fibromyalgia
Lupus
Oral Health
Osteoporosis
Blogger
Business Development
Consumer Engagement
Consumer Insights
Digital Marketing
Event Planner
Finance
Marketing
Mobile App Development
Product Development
Program Development
Project Management
Strategy
3 More 3 Less
available as required

Bonnie and her team consults with entrepreneurs and startups developing products and services to improve all aspects of autoimmune care. Our mission is to exploit the convergence of digital tech with science and patient activism to publicize the invisible epidemic, reimagine research and empower patient communities, to advance towards individualized autoimmune diagnosis, treatment, coaching and care coordination. Our vision is to help patients progress from managing disease to living their healthiest selves and preventing disease in their children and grandchildren. Over the past two years, Bonnie has interviewed 200+ start-up companies and presented at or attended 50+ digital health meetings, speaking on behalf of the 50M+ autoimmune patients around the world. With a unique body of experience as a healthcare provider, researcher, analyst and patient, Bonnie can help you bridge the autoimmune abyss.

MarlaJan

Patient turned Nurse turned ePatient

MarlaJan
Autoimmune Diseases
Breast Cancer
Cervical Cancer
Heart Disease
Infertility
Lupus
Rare Diseases
Blogger
Editor
Mobile App Development
Online Moderation
Other
Peer Support
Product & App Testing
Reporter
Social Media
Social Networking
available 10-20 hours/week

I went from pediatric cardiac patient to pediatric cardiac nurse, and somewhere along the way I was diagnosed with a slew of other diseases- systemic lupus (with many overlapping autoimmune diseases), cervical cancer, and had a double mastectomy after a pre-cancerous lump was found in my breast. Fun times.
When my nursing career had to be put on hold due to my deteriorating health, I began a new career as a patient advocate/influencer. I started my blog, Luck Fupus, in 2012, and have since used that as a platform to travel the country and share my (crazy) story, discuss hot button topics like patient centricity and transparency, and be the voice for patients. I've received scholarships to attend and speak at a variety of healthcare conferences including Stanford MedicineX, PCORI Annual Summit, MMM Transforming Healthcare, Patients as Partners and many more.

Leslie

Professional Patient Advocate AND Patient

Leslie
Arthritis
Chronic Illness
Lupus
Rheumatoid Arthritis
Peer Support
Social Media
Social Networking
Royal Oak, MI
available 10-20 hours/week

Leslie Rott has a PhD in Sociology from the University of Michigan and a Master's Degree in Health Advocacy from Sarah Lawrence College. She authors the blog Getting Closer to Myself, and has been active in the patient advocacy community since her diagnosis with lupus and rheumatoid arthritis in 2008. She has written for a variety of health sites and has attended a variety of conferences, including as a speaker at Stanford Medicine X.

She currently lives in Michigan.

Marisa

Professional Journalist, Author/Speaker, Founder of www.LupusChick.com

Marisa
Anemia
Aneurysms
Asthma
Food Allergy
Lupus
Stroke
Other
Rochester, NY
available as required

I have worked as a professional journalist for the past nine years, both salaried and freelance. Media outlets I have worked for include Gannett (USAToday/Democrat & Chronicle), U.S. News & World Report, Huff Post, Reader's Digest, Hearst, Christianity Today and more.
My writing expertise spans health, autoimmune disease, women's health issues, nutrition, expert recipe creation, and diet. Other topics I have published in include fashion, travel, and Christian topics.
In addition, I founded LupusChick 501c3 & LupusChick.com eight years ago. We are one of the fastest growing autoimmune communities, and currently serve approximately 200,000 visitors per week. Our nonprofit side has raised money & awarded five scholarships to Lupus patients since our inception. I run the blog, website and social media for LupusChick. Last, I am a published author and released my first book, Lupus: Real Life, Real Patients, Real Talk in 2013. My second book, a memoir, is set to debut on April 23, 2017.

Fabio

Influencer-Powered Clinical Trial Recruitment Expert

Fabio
ADHD (Attention Deficit/Hyperactivity Disorder)
Aging/Senior Health
Alzheimer's Disease
Anxiety
Aphasia
Arthritis
Asthma
Atrial Fibrillation
Autoimmune Diseases
Bipolar Disorder
Blood Disorders
Bone Cancer
Brain Cancer
Brain Health
Breast Cancer
Cancer
Caregiving
Cervical Cancer
Cholesterol
Chronic Illness
Clinical Trials
Colorectal (Colon) Cancer
Crohn's Disease
Cushing's Disease
Cystic Fibrosis
Dementia
Depression
Diabetes
Diabetes - Type 1
Diabetes - Type 2
Duchenne Muscular Dystrophy
Epilepsy
Fibromyalgia
Gastrointestinal Diseases
Gaucher's Disease
GIST
Heart Disease
Heart Health
Hepatitis C
HIV/AIDS
IBD (Inflammatory Bowel Disease)
Irritable Bowel Syndrome
Liver Cancer
Lung Cancer
Lupus
Lymphoma
Melanoma
Men's Health
Menopause
Mental Health
Migraine
Multiple Sclerosis
Myeloma
Neuromuscular Disorders
Non-Hodgkin's Lymphoma
Ovarian Cancer
Pain (Chronic Pain, Joint Pain, Back Pain)
Pancreatic Neuroendocrine Tumors
Parenting and Family Health
Parkinson's Disease
Pregnancy
Prostate Cancer
Psoriasis
Psoriatic Arthritis
Rare Diseases
Rheumatoid Arthritis
Schizophrenia
Seasonal Allergy
Seizures
Sexual Health
Sickle Cell Disease
Sleep and Sleep Disorders
Stroke
Ulcerative Colitis
Women's Health
65 More 65 Less
Costa Mesa, CA
available 40+ hours/week

I have been working with patient communities and health activists for 20+ years, helping dozens of companies (including biotech, pharma, recruitment firms and CROs) recruit patients for clinical trials through influencer-driven innovative digital programs. If you're interested in adding a patient influencer strategy to your recruitment efforts, please contact me.

Ken

Vice President, International Pain Foundation & Caregiver

Ken
Cancer
Caregiving
Celiac Disease
Chronic Illness
Complex Regional Pain Syndrome
Crohn's Disease
Depression
Diabetes
Disabilities
Dystonia
Endometriosis
Epilepsy
Eye Health/Diseases
Fibromyalgia
Fitness
Food Allergy
Gastrointestinal Diseases
Health Public Policy
Healthy Living
Heart Disease
Hemophilia
HIV/AIDS
Learning Disorders
Lupus
Men's Health
Migraine
Multiple Sclerosis
Muscular Dystrophy
Neuromuscular Disorders
Nutrition
Oral Health
Osteoporosis
Other
Pain (Chronic Pain, Joint Pain, Back Pain)
Post-Traumatic Stress Disorder
Psoriasis
Reflex Sympathetic Dystrophy
Rheumatoid Arthritis
Seizures
Sexual Health
Sjogren's Syndrome
Skin Cancer
Skin Health/Diseases
Sleep and Sleep Disorders
Thyroid Cancer
Thyroid Diseases
Ulcerative Colitis
Women's Health
38 More 38 Less
Business Development
Clinical Research
Consumer Engagement
Consumer Insights
Crowdsourcing
Digital Marketing
Editor
Event Planner
Finance
Health Data Tracking
Influencer Marketing
Marketing
Mobile App Design
Mobile App Development
Online Moderation
Operations
Other
Peer Support
Product & App Testing
Product Development
Program Development
Project Management
Public Relations
Reporter
Social Media
Social Networking
Strategy
17 More 17 Less
San Tan Valley, AZ
available less than 10 hours/week

Ken Taylor has be a caregiver since 2003 for his wife who has multiple chronic pain diseases. Ken is a former licensed insurance agent. Ken worked in the banking industry for 12 years at MCM, Bank of America, Wells Fargo, and Neiheisel Law Firm. Currently, Ken is a broadcast engineer for Dish Network. Ken also serves as the VP of the International Pain Foundation, is on the board of advisers for Pain Pathways Magazine, is the graphics editor for iPain Living Magazine. Ken serves on several pain advocacy coalitions including the Consumer Pain Advocacy Task Force and State Pain Policy Advocacy Network. He is an Amazon best selling author, motivational speaker, and Reality TV Personality sharing his story of caregiving and helping others better understand the healthcare system.

Brittany

Chronic Illness Ambassador, Blogger, Exercise, Health and Nutrition Advocate

Brittany
Arthritis
Lupus
Blogger
Clinical Research
Event Planner
Health Data Tracking
Peer Support
Social Media
West Caldwell, NJ
available 10-20 hours/week

As a graduate from Rutgers University's Exercise Science and Kinesiology Program, I have extensive knowledge in the physiology of organ systems, and how exercise and nutrition affects that as well as the biomechanics of the joints. Since graduating, I have research experience in regenerative medicine, and will be pursuing my MPH at NYU. This past year since being diagnosed with lupus, I started a health and wellness blog called The Positivity Project (the-positivityproject.blogspot.com) to educate others what it is like to live well with a chronic condition and how to keep a positive mindset no matter what life throws at you! I hope to consult others on how to live the most fulfilling life that they can.

Tiffany

CEO and Co-Founder IFAA: International Foundation for Autoimmune & Autoinflammatory Arthritis

Tiffany
Autoimmune Diseases
Lupus
Psoriatic Arthritis
Rheumatoid Arthritis
Business Development
Clinical Research
Consumer Engagement
Consumer Insights
Influencer Marketing
Marketing
Online Moderation
Operations
Program Development
Public Relations
Social Media
Social Networking
Strategy
3 More 3 Less
St. Louis, MO
available less than 10 hours/week

Prior to being diagnosed with Rheumatoid Arthritis, Sjogren's Syndrome, and eventually Axial Spondylitis, I was a public speaker, college teacher, and executive level business development professional & project manager. Unable to work normal business hours due to my disease limitations I translated my skills to the nonprofit world, focusing on an unmet need to group like diseases together to promote earlier detection, referrals, diagnosis, & access to treatments. I am exceptionally savvy in patient collaborations in regards to the R & D continuum (all phases) & am an asset on advisory panels or as a meeting speaker on patient engagement (specifically with industry). I currently hold the solo chair as a patient reviewer of grants at NIAMS/NIH, so anything with research process/development is a good fit for me. I would be a great candidate for teaching pros of patient engagement, how to engage, & what patients most want from researchers & industry.

Amanda

Passionate "Actively Engaged Patient"

Amanda
Alternative Medicine
Arthritis
Blood Disorders
Caregiving
Chronic Illness
Depression
Fibromyalgia
Fitness
Gastrointestinal Diseases
Health Public Policy
Healthy Living
Heart Health
Irritable Bowel Syndrome
Lupus
Mental Health
Nutrition
Pain (Chronic Pain, Joint Pain, Back Pain)
Rare Diseases
Women's Health
9 More 9 Less
Blogger
Consumer Engagement
Consumer Insights
Digital Marketing
Event Planner
Influencer Marketing
Marketing
Online Moderation
Peer Support
Public Relations
Reporter
Social Media
Social Networking
Strategy
4 More 4 Less
Culver City, CA
available 31-40 hours/week

Health Activist / Patient Advocate / Speaker / Patient Engagement / Brand Ambassador

Currently representing the Lupus community as the "Face of Lupus" for the International Pain Foundation.
My story "Living Well with Lupus" isa chapter in Jan Oldenburg's book "Participatory Healthcare" about patient engagement in today's healthcare system.
Presented at the 2016 "Connected Health Conference" for the "Patients as Innovators and Partners" panel.
The British Medical Journal published my article on the impact of Social Media in Patient Communities.
Represented the Lupus Foundation of America and the Lupus Research Institute as a empowered patient advocate on Capitol Hill.
Actively participated in advocacy in person & online.

Shared my story at #TEDMED on stage "Great Challenges" ambassador
Presented iat Lincoln Center on Community Engagement as a Brand Ambassador.
Moderated a panel of patient activists and shared my Lupus journey at the 92nd Street Y in New York City.


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