Resources

Allsup 

Allsup provides expert disability representation throughout the SSDI process. Their mission is to provide help to people with disabilities. Applying for disability can be a long and sometimes excruciating process. Allsup provides compassionate, professional, and effective help with every step of the process for a small fee. Let Allsup do all of the work for you so you can focus on taking care of yourself!

Call (866) 606-8812 to obtain a FREE evaluation to determine if you are eligible for disability benefits.

https://www.allsup.com/free-social-security-disability-evaluation

 

Asbestos.Com

“At Asbestos.com, they have been providing free help and hope to families affected by mesothelioma for more than 10 years. If you are a patient or caregiver affected by this illness, they are here to support you. [Their] free mesothelioma guide will answer many of the questions posed by patients and caregivers. [Their] packet has helped hundreds of families affected by the disease.

To find out more, please visit their website:

https://www.asbestos.com

 

Angel Flight

“Angel MedFlight is the air ambulance industry’s premier air medical transport provider. We know that each patient is unique and we will go to any length to ensure that each transfer is as smooth, comfortable and stress-free as possible. You may contact us at 877-ANGEL70 at any time; we are available 24 hours a day, 7 days a week, 365 days a year”

Contact info for Angel Medflight

Phone: (877) 264-3570 – (877) ANGEL-70

International Dialing: (480) 634-8017

Facsimile: (888) 883-9506

International Facsimile: (480) 247-4603

http://www.angelflight.com/

Email: info@angelmedflight.com

 

Ask Dr. Karen

Dr. Karen, Cushing’s survivor and Cushing’s patient advocate answers questions online pertaining to chronic illness, the emotional and psychological impact of chronic illness, coping, and other related issues. Questions can be submitted by e mailing drkarenthames@epictogether.org

Website: http://www.youtube.com/drnkarenthames

 

Battleground Diagnosis

“Battleground Diagnosis: The War to Survive Cushing’s Disease/Syndrome”: A Documentary feature length film about Cushing’s patients and their fight to survive Cushing’s Syndrome. Supplemental educational disc will be included and geared towards increasing awareness in the medical community as well as the general public. CoProducers include Dr. N. Karen Thames and Marc Harris.

Website: http://www.battlegrounddiagnosis.com (under construction)

You can like the documentary page on Facebook: http://www.facebook.com/Hug.A.Cushie

 

Caring Voice Coalition

 “Mission:

To empower patients who live with a life-threatening chronic disease through comprehensive outreach programs and services aimed at financial, emotional and educational support.

Provides financial grants to alleviate the burden of medication co-payments and insurance premiums; call or check website to view list of supported diseases

Offers health insurance counseling

Offers online publication “Understanding Your Disability”

Provides drug discount card information and links to helpful resources on its website.”

Caring Voice Coalition serves Insured patients living with chronic and life-altering illnesses

Phone: (888) 267-1440

http://www.caringvoice.org/

 

Cushing’s Awareness

The EPIC Foundation proudly works in alliance with Janine Gilbert, founder of Cushing’s Awareness. Cushing’s Awareness is a site dedicated to promoting the advocacy of Cushing’s patients and increasing awareness of Cushing’s Syndrome. To learn more information about this affiliate, you can go to www.facebook.com/cushingsawareness/

 

Cushing’s Connection Advocacy Program

Go to http://www.cushingsconnection.com There you will find an abundance of information along with the option of being paired with a patient advocate who can help you with your journey with Cushing’s Syndrome/Disease. In addition, they offer a free for all symptom tracker to help track your symptoms for optimal symptom management along with an organized way of communicating with your Doctors.

http://www.cushingsconnection.com

 

Cushings-Help

Cushing’s survivor Mary Kelly O’Connor has dedicated the last two decades of her life giving back in a mighty way! She pioneered community building through social media and was the first advocate to help increase awareness as well as create a space for others to learn more about their illness as well as share with others. She continues to do this tremendous work and offers valuable resources to the community and their loved ones.

http://www.cushings-help.com

 

Disabilities-R-Us

 In the words of Disabilities-R-Us: “Welcome to Disabilities-R-Us, the chat room and community created by and for those of us with physical disabilities (but everyone is welcome). For over 20 years we have been providing a warm and friendly place where you can make new online friends from all over the world.”

Website: http://www.disabilities-r-us.com/

E mail: http://disabilities-r-us.com/@DisabilityChat

 

EndPain

“EndPain is a unique organization using storytelling and narrative to dismantle paradigms of shame, guilt, and fear.” They share the brave stories of those suffering with invisible chronic illness and illnesses that others do not understand.

EndPain is interested in your story submissions so they can be a voice for you!

You can follow this link to read the instructions for how to enter your own personal story for publication: https://www.endpain.com/tell-us-your-story.html

The website for EndPain is: https://www.endpain.com/

 

ENDPAIN

2231 South Barrington Avenue

Los Angeles, CA 90064

310-401-6759

 

The EPIC Foundation

Empowering People with Invisible Chronic Illness (EPIC) Foundation is a 501C3 nonprofit organization. The EPIC foundation provides support, advocacy, education and tools to people who are affected by chronic illness. This foundation provides various resources to help people through the process of living with their chronic illnesses. EPIC supports patients and caregivers facing chronic diseases including Cushing’s Disease, Secondary Adrenal Insufficiency, Addison’s/Adrenal Insufficiency, and Growth Hormone Deficiency to name a few. The EPIC Foundation’s staff includes Psychologists trained in helping patients and caregivers.

The EPIC foundation is unique due to the nature of how it embraces the mind, body, and spirit rather than only the actual disease. The EPIC Foundation addresses vital issues such as trauma and loss which affect the community.

www.epictogether.org

 

Global Genes (Allies in Rare Disease)

Global Genes provides support to patients with rare diseases. This is their mission in their own words: “To Eliminate the Challenges of Rare Disease.

We build awareness, educate the global community, and provide critical connections and resources that equip advocates to become activists for their disease.”

Website: https://globalgenes.org/

 

Global Genes

World Headquarters

28 Argonaut, Suite 150

Aliso Viejo, CA 92656

T: 949-248-RARE (7273)

 

HealthWell Foundation

 The HealthWell Foundation provides financial assistance to eligible individuals to cover co-insurance, co-payments, health care premiums and deductibles for certain medications and therapies.

They serve Insured patients living with chronic and life-altering illnesses to help them afford their medical treatments

Phone: 800-675-8416

https://www.healthwellfoundation.org/

 

Kathy’s House

Kathy’s house is your home away from home when seeking medical care or surgery in the Milwaukee/Brookfield, WI area. Through this program, you and your caregiver can receive free lodging during the time of your treatment. It is sponsored through donations. You are not required to pay a fee during your stay. Guests receive their own spacious bedroom.

“Kathy’s House is a non-profit hospital hospitality house designed to accommodate individuals visiting Milwaukee area hospitals for medical treatment as well as their caregivers. To make arrangements to stay at Kathy’s House, you must first have a referral faxed to Kathy’s House by a Health Care Professional familiar with the patient. Kathy’s House does not charge guests to stay. Guests are asked to make a donation to Kathy’s House.”

Contact info:

Kathy’s House, Inc.

600 North 103rd Street

Milwaukee, Wisconsin 53226

(414) 453-8290

http://www.kathys-house.org/


Mark Hansel Tax & Accounting LLC

Mark Hansel, CPA, EA

Park Ridge, IL (will travel locally and is licensed to do taxes in every state, long distance)

Phone: (224)725-0098

E mail: info@markhtax.com

Website: http://markhtax.com/

Mark is able to help with more complicated tax cases. Are you a chronically ill patient who is having difficulty with your taxes? Have you had student loans or other loans forgiven due to financial hardship but are now faced with paying hundreds or thousands in taxes because of the forgiven debt? Mark has a specialty in this area and can help you.

Let him know that Dr. Karen (Chicago) from The EPIC Foundation referred you.

 

NADF (National Adrenal Diseases Foundation)

“The National Adrenal Diseases Foundation is a 501(c) (3) non-profit organization dedicated to providing support, information and education to individuals having Addison’s disease as well as other diseases of the adrenal glands.”

NADF supports those who have a history of Cushing’s Disease and suffer from Primary or Secondary Adrenal Insufficiency. NADF is committed to bringing information regarding these rare diseases into the public’s awareness to facilitate early diagnosis and treatment. NADF sponsors support groups across the country allowing for an exchange of ideas and feelings by individuals who share a common illness. NADF members receive quarterly newsletters, educational materials, and access to a library of related information.”

http://www.nadf.us

 

NORD (National Organization for Rare Disorders)

 Nord has two programs that relate to Cushing’s Syndrome or Cushing’s Disease:

  1. Cushing’s Premium Co-Pay Program: This program helps with Co-Pays related to the Cushing’s medication, Korlym (Mifepristone). Call them if you need assistance paying for this medication.
  2. Cushing’s Medical Assistance Program: This programs helps for all expenses related to the diagnosis of Cushing’s. Seeking a diagnosis can be overwhelming for the patient and may involve far travels, lodging, imaging and testing, and other expenses. NORD is here to help!

If you have the aforementioned needs, call them. Additionally, NORD supports MANY rare diseases. You can find a list of all of their programs and the illnesses they have programs for on their website. You may also reach them by phone.

 

Phone: 855-864-4018

Fax: 203-517-0978

Website: https://rarediseases.org

 

Nurture thy Nature

 The business of opening people’s eyes and ears to the silent war and how to take back their health and live a non-toxic lifestyle for optimizing the body and raising the quality of life. I provide resources such as hemp to raise people’s vibration since plants have MHz and our body respond well to these frequencies, example Idaho spruce (essential oil) is 580 MHz, it will go through brain barriers and alleviate muscle pain and remove emotional blocks, by nurturing our bodies in a non-toxic environment and being cautious of what we put in and around our body we can create the space for the body to heal, for the body is the perfect machine and can heal itself as god intended:   www.nurturethynature.com

Business phone number: 954-364-3652

Business website: www.nurturethynature.com

Email: info@nurturethynature.com

Please view their video here: https://www.youtube.com/watch?v=ZrIvH0mGM6o

 

Pfizer Program

If you are using a Pfizer drug including Growth Hormone and Cortef, you may be eligible for copayment assistance or even full coverage of your medications. You can explore these options by visiting http://www.pfizerhelpfulanswers.com Advocacy Programs

https://rarediseases.org/

 

Pfizer Bridge Program

 This program helps with the costs associated with Growth Hormone treatment, Genotropin. It can help with Copays or help with up to a certain amount towards the cost of your growth hormone treatment. You can go to their website to fill out an application: 

www.pfizerbridgeprogram.com

 

Rare Patient Voice

Rare Patient Voice provides the opportunity to pay you for your

participation in confidential surveys should they apply to your

condition(s) as either a patient or a family caregiver. You get a $5

gift card of your choice just for joining. Additionally, The EPIC Foundation will receive $5 for each qualified sign-up when you type “The EPIC Foundation” in the “How did you hear about Rare Patient Voice?” block.

Go to https://www.rarepatientvoice.com/sign-up/ to sign up

If you have any questions about Rare Patient Voice or signing up, you can contact Debi Vicchy Crist, a patient advocate, at Debi.crist@rarepatientvoice.com

 

RxHope

This organization helps patients determine if they are eligible for pharmaceutical companies’ patient assistance programs (for free or discounted brand name drugs) and then help guide patients through that process.

They serve patients in the U.S. needing financial assistance to obtain needed medications and health professionals.

Phone: 877-267-0517

https://www.rxhope.com/

 

Total Disability Discharge

Did you know that you can get a total discharge from your student loans?!!!! If you owe student loans, you can have them forgiven if you are on disability and/or you can get your physician to vouch for you. The number to call is 888-303-7818 and website is http://www.disabilitydischarge.com/