Erdheim-Chester Disease Global Alliance

פרופילי מימון

פתוח לחברי סגל הטכניון בלבד. אנא התחבר\י כדי לצפות בפרופילי המימון של הקרן (בפינה הימנית העליונה).

A group of patients from around the world and their loved ones have joined together to create the ECD Global Alliance. Our mission is to:

· Provide support to ECD patients and their loved ones

· Raise awareness of ECD

· Promote and fund research aimed at finding more effective and rational treatments for ECD, with a cure being the ultimate goal

· Share educational material regarding ECD

We are NOT medical professionals. We cannot diagnose patients. We do not offer medical advice. We do not promote any particular treatment options. Rather, we are there for each other and try to gather information from the medical professionals so we can make it easily available. It is the responsibility of the patient, loved ones and medical team to evaluate the use of this information when developing a program of care.

Our members deal with the everyday realities of coping with a rare, incurable disease (some have done this for decades). Until now, much of what has been learned, on the patient coping level, has been acquired through personal experience, one family at a time, one heart ache at a time. This group seeks to ease some of the hardships by helping newcomers to move from “panic” to “possibilities of care”.

As non-medical people, patients with any rare disease (and their loved ones) face the challenge of acquiring timely, reliable information. Participants of this ECD Global Alliance share what their doctors are doing TODAY. If a treatment or procedure shows promise you can help fast track that information to your doctor.

By educating ourselves we shorten the learning curve for patients and doctors and so reduce the burden of ECD for all.

It is our pleasure to share with you what we’ve learned.

We are ordinary people dealing with an extraordinary disease.

The 2013 End of Year Report provides more information about the accomplishments and goals for the organization. For more information see the "ECD Global Alliance" page

פרטי קשר:

support@erdheim-chester.org

הקרן אינה קרן תחרותית.