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It's tough out there!

Who is ERDC?

As people with rare diseases, we need absolutely every resource we can get!

 

At ERDC, we pride ourselves in NOT duplicating what other organizations are already doing, and step in to fill the gaps. Because we’re patients and care partners we know energy is limited and understanding about our diseases is scarce. Our tools, resources and Rare Candor podcast is designed to help make this journey easier.We create, test and implement solutions from real world experience and integrate your feedback to make our tools better.  That’s our role.

 

Whatever we have is yours. We will work with whomever is willing to join in providing support for the Rare Disease Community.

Take control of your disease

Available HEAT Kits™

Vasculitis

Vasculitis is a group of rare diseases characterized by inflammation of blood vessels, which can affect various organs and tissues in the body. This inflammation can lead to a range of symptoms depending on the organs involved and the severity of the condition.

IGG4

IgG4-related disease is an immune-mediated condition that can affect multiple organ systems. Common features include IgG4-related autoimmune pancreatitis, swelling of or within an organ system (an inflammatory pseudotumor), salivary gland disease, swollen lymph nodes (lymphadenopathy) and more.

Myasthenia Gravis

Myasthenia Gravis, a rare disease, can mimic other conditions, leading to potential misinterpretation by healthcare providers, exacerbating stress, particularly when communication and advocacy are hindered during emergencies or flares. Because of the breathing issues inherent in a Myasthenia Crisis, this kit includes a variety of pages to help keep you safe in an emergency!

CIDP

Chronic inflammatory demyelinating polyneuropathy (CIDP) is a neurological disorder that causes progressive weakness and impaired sensory function in the legs and arms.CIDP is closely related to Guillain-Barre syndrome (GBS) and is considered the "chronic counterpart" of GBS.CIDP is thought to be caused by the immune system mistakenly attacking and damaging the myelin sheath.
Reserve your kit
"When I am admitted to the hospital I usually have residents. They are eager and nice, but they have no idea about my diagnosis. The cards in the HEAT Kit really help them understand my underlying disease and the complexity of my medications and medical situation."
Anne Marie
"I was so thrilled to receive the Heat Kit. I had an opportunity to visit with my Rheumatologist and the use of the kit helped me remain focused on my health, ensure I covered all my key issues, and helped the doctor in creating a treatment plan."
John
"This kit is amazing. It has everything I need. I have been to so many ER's and they have no idea about my disease. Sometimes I think they believe I am making up how badly I feel. I feel so much less alone with this and for the first time I feel seen."
Rachel

Our Partners

We could not do what we do without the support of our corporate partners. Their support, engagement and commitment is invaluable.
As part of the healthcare ecosystem, they provide treatments that enable us to live longer, better lives.
We encourage you to get to know about the medication they offer by clicking their logo below.
Our advocacy partners are truly special. They share our belief that we are stronger together and that partnering is in the best interest of people impacted by rare disease. Living with a rare disease is tough. We can all us as many resources as we can get our hands on!
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ERDC is dedicated to improving access to quality care and treatments. We develop and distributes practical simple tools for patient populations to improve outcomes in their health care visits with providers and understanding medications and therapies.

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