Empowering Everybody, in Every BODY, Everywhere!
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Empowering Everybody, in Every BODY, Everywhere!
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Advocacy for EVERYBODY & every BODY, Everywhere!
Advocacy for EVERYBODY & every BODY, Everywhere!
Advocacy for EVERYBODY & every BODY, Everywhere!
Advocacy for EVERYBODY & every BODY, Everywhere!
Advocacy for EVERYBODY & every BODY, Everywhere!
Advocacy for EVERYBODY & every BODY, Everywhere!
Additional Communities for Advocacy with EveryBody Empowered
Welcome!
THANK YOU for visiting our website and the "Other Advocacy" page!
EveryBody Empowered is committed to Patient Advocacy for people with Rare Diseases, Chronic Illnesses and Disabilities. We participate in a variety of advocacy events to help raise awareness, educate, fundraise, and promote the increase of research and drug development for rare diseases and other chronic illnesses. We advocate for Accessibility issues, assistive technology and innovations, and causes that are impacting People with Disabilities. Please feel free to check out any of the links below, for access to organizations and resources that have to do with an array of diagnoses, conditions and other matters. I chose to share links for many of the diseases and conditions that I (Aimee Zehner) have, or that the people who are close to me have or had. There are thousands and thousands of diseases in the world, and there are many institutions and organizations that focus on these diseases. I lost family members and people I love to some rare and common conditions, and it is my desire to share in advocacy to honor them. Please do not get offended if diseases you have or advocate for are not listed, as I said, this is only a compilation of resources for diseases that I happen to be advocating for. The more rare disease advocacy & chronic illness advocacy, the better!
The links provided below are for the search engines or databases from reputable sources to learn about rare diseases and chronic illnesses. This is NOT an exhaustive list, just one small compilation to help you get started with your own medical research. If you are aware of (or work with/for) any additional health institutions or organizations with great databases that you think should be included on any of these lists, please send us an email with the Institution/Organization Name and link.
DISCLAIMER: Conducting research and reading about diseases is NOT the same as getting evaluated and diagnosed by your medical providers. The information and links provided on this page and website are for educational purposes only. EveryBody Empowered and Aimee Zehner are not responsible for any of the content provided by these other websites. EveryBody Empowered and Aimee Zehner do NOT offer or provide medical advice/diagnosis/diagnostics/treatments. We ask that you refer ALL personal health & wellness questions, and diagnostics/treatment questions to your healthcare & mental health providers. Thanks.
NON-HEALTH-RELATED ADVOCACY
In addition to our efforts of Advocacy in Healthcare, you may be unaware that we (EBE) also advocate as allies and in solidarity with others seeking Equity & Equality, Social Justice, & DEIA, as well as important causes for people in our communities across the globe. We are inclusive, diverse and equitable in our advocacy. We offer support within the LBGTIQ+ community, Anti-Racist support for POC, and Anti-Discrimination support for all human beings.
EBE is open to collaboration for specific initiatives in advocacy. Please contact us via email to discuss how we might join forces in the name of advocacy. Respect!
EveryBody Empowered is dedicated to *Empowering EVERYBODY, in every BODY, Everywhere!* We are ONE people.
Patient Resources for Rare Diseases & Chronic Illnesses
Links for Rare Disease & Chronic Illness Databases
Organizations that provide Rare Disease Advocacy, Chronic Illness Advocacy, Patient Advocacy, information and resources:
The National Organization for Rare Disorders
https://rarediseases.org/rare-diseases/
MAYO Clinic
https://www.mayoclinic.org/diseases-conditions
Johns Hopkins
https://www.hopkinsmedicine.org/health/conditions-and-diseases
Cleveland Clinic
https://my.clevelandclinic.org/health/diseases
National Institute of Arthritis and Musculoskeletal and Skin Diseases, on Autoimmune Diseases
https://www.niams.nih.gov/health-topics/autoimmune-diseases
The American College of Rheumatology
https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions
National Institute of Arthritis and Musculoskeletal and Skin Diseases
https://www.niams.nih.gov/health-topics
The Endocrine Society
https://www.endocrine.org/patient-engagement/endocrine-library
Rare Disease Legislative Advocacy
Patient Advocacy Organization and Program that focuses on Legislative Rare Disease Advocacy:
The EveryLife Foundation
We empower the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments, and cures.
https://everylifefoundation.org/about-us/
Rare Disease Legislative Advocates
Rare Disease Legislative Advocates (RDLA) is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. RDLA believes that every voice matters and that patients are the key to changing public policy.
https://everylifefoundation.org/rare-advocates/
Raynaud's Phenomenon, Arthritis & Rheumatological Diseases
Links for:
Rare Disease Advocacy
Chronic Illness Advocacy
Patient Advocacy
About Rheumatological Diseases
Everyday Health
https://www.everydayhealth.com/rheumatic-diseases/guide/
National Institute of Arthritis and Musculoskeletal and Skin Diseases
https://www.niams.nih.gov/health-topics/arthritis-and-rheumatic-diseases
MAYO Clinic on Rheumatology
https://www.mayoclinic.org/departments-centers/rheumatology/sections/conditions-treated/orc-20477148
About Raynaud's
In honor of all my friends who share this condition with me!
National Institute of Arthritis and Musculoskeletal and Skin Diseases
https://www.niams.nih.gov/health-topics/raynauds-phenomenon
The American College of Rheumatology
https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions
Johns Hopkins, on Raynaud's
https://www.hopkinsmedicine.org/health/conditions-and-diseases/raynauds-phenomenon
Mayo Clinic, on Raynaud's
https://www.mayoclinic.org/diseases-conditions/raynauds-disease/symptoms-causes/syc-20363571
Cleveland Clinic, on Raynaud's
https://my.clevelandclinic.org/health/diseases/9849-raynauds-phenomenon
About Arthritis:
In honor of my Grandmother M. Nicolich, my many friends with this condition, and myself:
National Institute of Arthritis and Musculoskeletal and Skin Diseases, on Arthritis
https://www.niams.nih.gov/health-topics/arthritis
Arthritis Foundation
Johns Hopkins, on Arthritis
https://www.hopkinsmedicine.org/health/conditions-and-diseases/arthritis
MAYO Clinic, on Arthritis
https://www.mayoclinic.org/diseases-conditions/arthritis/symptoms-causes/syc-20350772
Hashimoto's / Thyroid Disease
In honor of everyone I know with this wild condition, like yours truly!
The American Thyroid Association
https://www.thyroid.org/hashimotos-thyroiditis/
The Endocrine Society
https://www.endocrine.org/patient-engagement/endocrine-library/hashimoto-disease
National Health Institute of Diabetes and Digestive and Kidney Diseases
https://www.niddk.nih.gov/health-information/endocrine-diseases
Victoria Australia State Department of Health
https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/thyroid-hashimotos-disease
Polycystic Ovarian Syndrome (PCOS), & Women's Health
In honor of all the many friends I have living with this disease. Oh, how we WISH there was a cure, and any reasonable treatment options. So many symptoms that never get addressed by the healthcare community. PCOS may be a common condition, but it STILL doesn't have the funding or advocacy needed to get more research going or make drug developers help us to combat PCOS. All my ladies with PCOS know what I'm talking about. Please help me Advocate! For info, check out these links:
MAYO Clinic
https://www.mayoclinic.org/diseases-conditions/pcos/symptoms-causes/syc-20353439
US Dept of Health and Human Services - Office of Women's Health (good info)
https://www.womenshealth.gov/a-z-topics/polycystic-ovary-syndrome
Cleveland Clinic
https://my.clevelandclinic.org/health/diseases/8316-polycystic-ovary-syndrome-pcos
Eunice Kennedy Shriver National Institute of Child Health and Human Development
https://www.nichd.nih.gov/health/topics/pcos
https://www.nichd.nih.gov/health/topics/pcos/conditioninfo/symptoms
Johns Hopkins
https://www.hopkinsmedicine.org/health/conditions-and-diseases/polycystic-ovary-syndrome-pcos
NHS - UK
https://www.nhs.uk/conditions/polycystic-ovary-syndrome-pcos/
The link between PCOS & Diabetes, from the National Health Institute of Diabetes and Digestive and Kidney Diseases
US Dept of Health and Human Services - Office of Women's Health, on Endometriosis
https://www.womenshealth.gov/a-z-topics/endometriosis
Diabetes - Type 2
In honor of my late Father H. Zehner, who battled this disease for much of his life, enduring many unfortunate complications. Also in honor of my friends (and self) living with this disease. It takes a LOT to get this disease under control, but it is necessary and YOU are worth it! If you are Diabetic, talk with your healthcare provider about getting a Continuous Glucose Monitor (CGM device/system). I personally recommend the Dexcom G6. I am happy to talk with you about why you need a CGM. The link is at the bottom of this list.
The American Diabetes Association (a GREAT resource)
https://diabetes.org/diabetes/type-2
MAYO Clinic
https://www.mayoclinic.org/diseases-conditions/type-2-diabetes/symptoms-causes/syc-20351193
National Health Institute of Diabetes and Digestive and Kidney Diseases
https://www.niddk.nih.gov/health-information/diabetes/overview/what-is-diabetes/type-2-diabetes
National Health Institute of Diabetes and Digestive and Kidney Diseases, on Diabetic Neuropathy
National Health Institute of Neurologic Disorders and Stroke, on Peripheral Neuropathy
https://www.ninds.nih.gov/peripheral-neuropathy-fact-sheet#
Cleveland Clinic
https://my.clevelandclinic.org/health/diseases/21501-type-2-diabetes
The link between PCOS & Diabetes, from the National Health Institute of Diabetes and Digestive and Kidney Diseases
NHS Inform / Scotland
https://www.nhsinform.scot/illnesses-and-conditions/diabetes/type-2-diabetes
To learn about the "Dexcom G6" Continuous Glucose Monitor (CGM), visit:
https://www.dexcom.com/get-started-cgm/119
Lupus, Lupus Nephritis, Proteinuria & other Kidney Diseases
In honor of friends and loved ones who had or have these conditions.
National Health Institute of Diabetes and Digestive and Kidney Diseases, about Lupus Nephritis https://www.niddk.nih.gov/health-information/kidney-disease/lupus-nephritis
MAYO Clinic, about Lupus
https://www.mayoclinic.org/diseases-conditions/lupus/symptoms-causes/syc-20365789
Lupus Foundation of America
National Institute of Arthritis and Musculoskeletal and Skin Diseases, about Lupus
https://www.niams.nih.gov/health-topics/lupus
The American College of Rheumatology, about Lupus
https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Lupus
National Health Institute of Diabetes and Digestive and Kidney Diseases, about Kidney Diseases https://www.niddk.nih.gov/health-information/kidney-disease
Cleveland Clinic, about Proteinuria
MAYO Clinic, about Proteinuria
https://www.mayoclinic.org/symptoms/protein-in-urine/basics/causes/sym-20050656
The National Kidney Foundation
https://www.kidney.org/atoz/content/proteinuriawyska
Lupus Research Alliance
https://www.lupusresearch.org/understanding-lupus/what-is-lupus/
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Pulmonary (Lung) Disorders
American Lung Association, lung diseases database
https://www.lung.org/lung-health-diseases/lung-disease-lookup
CHEST Foundation, lung diseases/disorders database
https://foundation.chestnet.org/lung-health-a-z/
Asthma and Allergy Foundation of America
MAYO Clinic, on Asthma
https://www.mayoclinic.org/diseases-conditions/asthma/symptoms-causes/syc-20369653
CHEST Foundation, on Interstitial Lung Disease
https://foundation.chestnet.org/lung-health-a-z/interstitial-lung-disease-ild/
Alzheimer's, Neuropathy & Other Neurologic (Brain) Diseases & Disorders
A-Z Lists and Databases for Neurological diseases & disorders:
National Health Institute of Neurologic Disorders and Stroke, List of All Disorders
https://www.ninds.nih.gov/health-information/disorders
National Organization for Rare Disorders (NORD)
Phone: 203-744-0100 or 800-999-6673
Muscular Dystrophy Association, Database & List for all Neuromuscular Disorders
https://www.mda.org/disease/list
Johns Hopkins, on Neurologic Disorders
https://www.hopkinsmedicine.org/health/conditions-and-diseases/neurological-disorders
BrainFacts.org, list of all neurological disorders
https://www.brainfacts.org/diseases-and-disorders/neurological-disorders-az
Child Neurology Foundation
https://www.childneurologyfoundation.org/what-is-a-neurologic-disorder/
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About Alzheimer's/Dementia:
In Honor of my Grandmother M. Nicolich, Uncle M. Nicolich, and friends' family members.
Alzheimer's Disease Education and Referral (ADEAR) Center
Phone: 800-438-4380
Alzheimer's Association
Phone: 800-272-3900 or 312-335-8700
Alzheimer's Drug Discovery Foundation
Phone: 212-901-8000
Alzheimer's Foundation of America
Phone: 866-232-8484
BrightFocus Foundation
Phone: 800-437-2423
National Institute on Aging (NIA)
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About Neuropathy:
Cleveland Clinic, on peripheral neuropathy
https://my.clevelandclinic.org/health/diseases/14737-peripheral-neuropathy
National Health Institute of Neurologic Disorders and Stroke, on Peripheral Neuropathy
https://www.ninds.nih.gov/peripheral-neuropathy-fact-sheet#
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About Parkinson's:
In Honor of my Great Uncle M. Zehner and dear Family Friend C. Fuentes.
National Institute on Aging
https://www.nia.nih.gov/health/parkinsons-disease
Parkinson's Life - International Community
MAYO Clinic
https://www.mayoclinic.org/diseases-conditions/parkinsons-disease/symptoms-causes/syc-20376055
Parkinson's Foundation
The Michael J. Fox Foundation for Parkinson's Research
https://www.michaeljfox.org/parkinsons-101
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About Epilepsy:
In honor of multiple friends that suffer with this disease, both living and deceased.
Epilepsy Foundation
MAYO Clinic , on Epilepsy
https://www.mayoclinic.org/diseases-conditions/epilepsy/symptoms-causes/syc-20350093
Cleveland Clinic, on Eilepsy
https://my.clevelandclinic.org/health/diseases/17636-epilepsy
Epilepsy Alliance of America
https://www.epilepsyallianceamerica.org/
Epilepsy Society
https://epilepsysociety.org.uk/about-epilepsy/what-epilepsy
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About ALS:
In memory of my late Father-in-Law, H. Gordon, and for friends currently battling this disease.
MAYO Clinic on ALS / Lou Gehrig;s Disease
The Muscular Dystrophy Association on ALS / Lou Gehrig;s Disease
https://www.mda.org/disease/amyotrophic-lateral-sclerosis
ALS Association
https://www.als.org/understanding-als/what-is-als
ALS Therapy Development Institute
https://www.als.net/what-is-als/
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For CMT / Charcot Marie Tooth:
In honor of a dear Family Friend living with CMT
Muscular Dystrophy Association, on Charcot MarieTooth Disease (CMT)
https://www.mda.org/disease/charcot-marie-tooth
MAYO Clinic, on Charcot MarieTooth Disease (CMT)
Charcot MarieTooth Association USA
https://www.cmtausa.org/understanding-cmt/what-is-cmt/
CMT Research Foundation
https://cmtrf.org/what-is-cmt-disease/
Post Concussion Syndrome (PCS) & mild Traumatic Brain Injury (mTBI)
In honor of yours truly, and my friends who also have or had PCS/mTBI.
MAYO Clinic
https://www.mayoclinic.org/diseases-conditions/post-concussion-syndrome/symptoms-causes/syc-20353352
The Vestibular Disorders Association (VeDA), on Traumatic Brain Injury
https://vestibular.org/article/diagnosis-treatment/types-of-vestibular-disorders/tbi/
The Vestibular Disorders Association (VeDA), on Vestibular Disorders
https://vestibular.org/article/diagnosis-treatment/types-of-vestibular-disorders/
Concussion Legacy Foundation, on Post Concussion Syndrome
https://concussionfoundation.org/PCS-resources/what-is-PCS
Cognitive FX, on Post Concussion Syndrome
https://www.cognitivefxusa.com/blog/post-concussion-syndrome-and-post-concussion-symptoms-pcs
Article on PCS
"Postconcussive Syndrome" By Permenter CM, Fernández-de Thomas RJ, Sherman Al.
https://www.ncbi.nlm.nih.gov/books/NBK534786/
Deep Vein Thrombosis
In honor of yours truly, and friends with DVT... I pray we stay blood-clot-free!
MAYO Clinic, on Deep Vein Thrombosis (DVT)
https://www.mayoclinic.org/diseases-conditions/deep-vein-thrombosis/symptoms-causes/syc-20352557
Cleveland Clinic on DVT
https://my.clevelandclinic.org/health/diseases/16911-deep-vein-thrombosis-dvt
Deep Vein Thrombosis, Pulmonary Embolism & AFib, explained (site via Bristol:Meyers Squibb)
https://www.notimetowait.com/dvt-pe-explained
A list of links for additional organizations for Deep Vein Thrombosis, Pulmonary Embolism and AFib
https://www.notimetowait.com/helpful-links
NHS - UK
https://www.nhs.uk/conditions/deep-vein-thrombosis-dvt/
Non-Hodgkin's Lymphoma, Lymphomas, Leukemia & Other Cancers
In honor of my Mother R. Zehner who died from NHL, my Father H. Zehner who died from Undifferentiated Cancer, my Cousin T. Maurer (Nicolich) who died from Leukemia, Great Uncle D. Nicolich who died from Stomach Cancer, my Grandfather who died from Prostate Cancer, my childhood best friend V. Borg, my friend's Mother C. Keating, my many cousins who had Melanomas, and my friends who battled Breast Cancer and other forms of cancer. Thankful for all the cancer survivors, and missing the ones we've lost. Always stay pro-active with your health, as much as you can! Get check-ups regularly. Do cancer screenings (including mammograms, or colonoscopies, and other tests). If you feel in your true intuition that something is wrong, seek out the healthcare you need! Early detection of cancer is important. You might save your own life.
The Leukemia and Lymphoma Society, on NHL
https://www.lls.org/lymphoma/non-hodgkin-lymphoma
The Leukemia and Lymphoma Society, all
MAYO Clinic, on NHL
https://www.mayoclinic.org/diseases-conditions/non-hodgkins-lymphoma/symptoms-causes/syc-20375680
The American Cancer Society, on NHL
https://www.cancer.org/cancer/non-hodgkin-lymphoma/about/what-is-non-hodgkin-lymphoma.html
The American Cancer Society
The Lymphoma Research Foundation, on NHL
https://lymphoma.org/understanding-lymphoma/aboutlymphoma/nhl/
Cleveland Clinic, on NHL
https://my.clevelandclinic.org/health/diseases/15662-non-hodgkin-lymphoma
Blood Cancer UK
https://bloodcancer.org.uk/understanding-blood-cancer/lymphoma/non-hodgkin-lymphoma
Aimee & fellow Rare Disease Legislative Advocates speaking with Congressmen & Senators re: legislation impacting the Rare Disease Community.
Two successful meetings as Team Lead, with Senator Schumer & Senator Gillibrand's Legislative Correspondents, Grace Magaletta & Jesse Rodriguez, and our amazing group of RDLA Advocates! So proud!
Need patient advocacy, chronic illness advocacy or rare disease advocacy?
Are you interested in having Aimee Zehner advocate for your institution, organization, company or group for a specific rare disease/chronic illness, accessibility or healthcare issue, rare disease related legislation, or other important cause; or need a Spokesperson to fundraise & help raise awareness? Contact us!
Seeking a Custom Disease-Specific/Patient Support, Group?
Are there orgs/resources you think we should include here?
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EveryBody Empowered, LLC - About Our Website
WEBSITE DISCLAIMER: All content found on this website [everybodyempowered.com] is for informational purposes only, and is subject to change. EveryBody Empowered, LLC does its best to provide up-to-date and reliable content (such as information, links, resources), but we can not predict when changes will occur that require us to update / change or remove content from our website. Sometimes scientific, medical or world discoveries are made that changes what we thought we knew (such as a new theory, disease causation, a law, or societal norm). Also, "cancel culture." We will do our best to learn about and reflect necessary changes in the content we provide, AND in who or what we recommend or support as resources. We apologize for any inconvenience this may cause. Please notify us by email if you notice any content that requires attention or updates, or content that goes missing that you were hoping to save, or that you think should be added. Content on our website is subject to change at our discretion. Also, please remember that EveryBody Empowered, LLC and Aimee Zehner do NOT provide medical, psychological, health, financial or legal advice, or therapy. EveryBody Empowered, LLC and Aimee Zehner do NOT provide diagnosis, diagnostics, treatments, medicine, medical, financial or legal services. EveryBody Empowered, LLC website content / information is not intended to replace content / information found on reputable primary sources (such as the official websites for The United States National Institutes of Health / NIH, or National Organization for Rare Disorders / NORD), or from your own providers or licensed professionals. Please discuss all personal medical or psychological health, financial, or legal issues, questions or concerns with your own healthcare team, appropriate licensed provider or professional. Thank you.
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