The aims of our support group are two-fold:
- We help link newly-diagnosed patients with others who have the same condition, so members can help each other, share their concerns, and offer support, comfort and friendship.
- Another benefit of our support group is the International H.E.A.R.D Registry, which each member is asked to contribute towards, by providing information about their disease, their treating doctors and the medical institution/s they are attending, the treatments they receive, and the effects of the treatments. This information has become a valuable source for both new and existing members, as well as some noted physicians. We request that members treat the contents with confidentiality, but encourage members to share the information with their medical team, if it can help in any way.
Below is an extract from an article which refers to our registry, and how resourceful it is:
The Importance of Clinical Registries for Pulmonary Epithelioid Hemangioendothelioma.
written by Kpodonu, Jacques MD; Tshibaka, Cimenga MD; Massad, Malek G. MD, FCCP,
The University of Illinois at Chicago, Chicago, IL
(Included here with permission from the American College of Chest Physicians.)
...... Due to the rarity of this disease, double-blind randomized controlled studies investigating at various management strategies will not be possible. Clinical registries such as the Armed Forces Institute of Pathology Registry and the International Hemangioendothelioma, Epithelioid Hemangioendothelioma and Vascular Disorders Registry are places where physicians as well as patients and their families can share their symptoms and treatments, along with response rates and relapses. Such registries may help both patients and physicians alike in following the natural history of the disease and its response to different therapeutic regimens.
Please email [email protected] for more information.