Patient-to-Patient
Case Log is a table that provides information about some of the patients registered with the ECD Global Alliance. This information can be used to see how ECD affects individuals differently. If you are a patient and would like your information to be included, please send your information to support@erdhiem-chester.org. If you are a patient and would like to be in contact with one of the patients listed, please send your request to support@erdheim-chester.org.
Case Locations is a table that shows the location of ECD patients registered with the ECD Global Alliance.
The ECD Networking Directory provides a mechanism for patients and caregivers affected by ECD to connect with each other. For those wishing to participate, the above link provides access to a form that must be completed, signed and sent into the organization. Once you have done this your information will be included in the ECD Networking Directory and you will receive a copy.
The
following are links to other websites.
Please note, there is great appreciation for all articles and information shared
about ECD at the following sites and within the associated articles.
However, at times some of the facts concerning ECD can be misconstrued.
Please be aware some information about ECD in some articles may not be
scientifically correct.
Blogs
and eGroups
The above contains links to blogs and eGroups that have been created by members
of the ECD Global Alliance.
The following are links to news feature stories focused on ECD patients and families.
Members of the ECD Global Alliance are dedicated to helping to raise awareness of Erdheim-Chester Disease. The following links provide access to news articles and videos about ECD patients and their families.
The former Bradford doctor having to adapt to a life-changing condition
Describes the exercise program, and related benefits, of one ECD patient, a former doctor who lives in the UK.
A Rare Disease Leaves a Man Feeling Blessed
An inspirational first person account from someone who is living with ECD.
A version of the "A Man Blessed" story from above that does not require a subscription to the newspaper.
Erdheim-Chester Patient Gets Lungs
A short article appeared in the Japanese news media in September 2011. It states that the first lung transplant to an Erdheim-Chester Disease patient occured at Okayama University Hospital in Japan.
Angel Hearts Launches in Seymour
An article about a man, with Erdheim-Chester Disease, who with his wife has started a nonprofit orgnization called, 'Angel Hearts'. The organization is dedicated to helping families who are in need because of medical conditions, including illness and injury.
Prescott Valley woman's rare disease triggers fundraiser for research
Anr article about a patient and her husband , living in Arizona, who are working to help raise awareness of ECD and fund ECD research.
Rare Diseases - CBC Radio Interview with Two Erdheim-Chester Disease Patients
A radio interview aired on The Current. Anna Maria Tremonti interviews two Erdheim-Chester Disease patients about the challenges facing Canadian citizens living with a rare disease.
First Annual Gary Brewer Memorial Run
A local news story about a high school student
who is working to raise money for ECD research.
POKIN AROUND: Cottleville, Missouri couple
blindsided by rare, deadly disease
A local news story about a couple in Missouri
who are learning to cope with Erdheim-Chester Disease.
Almost Alone: Jefferson County man is
one of the few with Erdheim-Chester Disease
A local news story about a Hillsboro, Missouri
man and his journey related to Erdheim-Chester Disease.
ECD Patient Meets Future Husband at a Scuba Dive
Event
A news story about a young woman with Erdheim-Chester
Disease (see story below) who met her future husband at a scuba dive event.
ECD Patient Interview: Long road to diagnosis for doctor with rare
condition
A news story from the Yorkshire Post about a
doctor who has been diagnosed with Erdheim-Chester
Disease. He discusses his experiences in living with ECD.
ECD Patient Learns to Scuba Dive
A story about a young woman with Erdheim-Chester
Disease who has been blinded by the disease. In spite of this she learned to
scuba dive.
Last updated: January 30, 2012