I joined in a private fb support group and have also completed my patient survey. This group has pros and cons. Pros : The entire purpose is to "find a cure." This is almost impossible as the rate genetic disease is within our DNA. It gives me hope they may be getting close to finding a possible treatment. Cons: This disease needs much more public awareness. The PXE.org group has done nothing to facilitate this nor have they created any support for so many patients , people who are in need of much better medical care. The disease affects us patients symptomatically. We have to deal with the afflictions it causes as they occur. There no preventative treatment nor even a way to know what you will have to face if you have the disease. Lets get more public awareness out. They say less than 5k of people have PXE . Its a registered disease with US. But no assistance, no disability even though it can cause central vision blindness. Perhaps others have disease but with lack of Public knowledge we will never know.
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- EIN 04-3294138
- (202) 362-9599
- 4301 Connecticut Ave Nw Washington DC 20008-2304 USA
- www.pxe.org
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Nonprofit Overview
Causes: Diseases of Specific Organs, Health, Medical Research, Specifically Named Diseases, Voluntary Health Associations & Medical Disciplines
Mission: Pxe international inc. Initiates and conducts research, educates clinicians, and supports individuals affected by pseudoxanthoma elasticum (pxe).
Programs: Pxe international initiates, conducts, and supports research on pseudoxanthoma elasticum (pxe). We manage a registry and biobank, an epidemiological study, and a number of other biomedical studies. We recruit for clinical trials.
pxe international supports affected individuals and their families by offering clear, concise, and up-to-date information. We use regional meetings, webinars, our website, youtube, twitter, facebook, biennial conferences, and a google groups chat list to enable a robust, interactive network of support. We also offer contact information for others with pxe who have agreed to be contacted, a 24-hour access phone line, and a one-way announcements newsletter email list.