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We are very happy that you’ve found us. The Angioma Alliance
website is a resource for those who are diagnosed with cavernous
angiomas of the brain and spine and is a good introduction to
our organization. The website provides a great deal of
information and a number of opportunities for receiving or
giving support. Here is what you will find in the different
areas of the site:
Contact Us
Angioma Alliance is not just a website. We are an active,
growing organization that provides a variety of services. Please
feel free to contact us via phone, email, or regular mail if you
have questions or need more information about our programs. WE
ARE NOT PHYSICIANS and so cannot offer medical advice, but we
can offer suggestions for resources and general information
about the illness.
Make a Donation
This is self-explanatory. Angioma Alliance is a non-profit
organization that exists only because of the support of our
donors. If you have received something that you consider of
worth from us and if you have the resources, we would greatly
appreciate your financial support. The Make a Donation link
allows you to donate using Paypal or, alternately, it provides
our address for mailed donations.
Mailing List
We offer an email mailing list. This is an announcements only
list. Most often, we will send a message to let you know when a
new newsletter has been put on the site or for any other very
important announcements. You will receive very little email by
joining this list. For regular updates on chats, family
conference news, etc., you should join the email listserv or
check the Community Forum, both of which are explained under
Community and Support below.
New Visitors
The New Visitors section of our site provides the basic
information everyone should know about cavernous angioma as well
as a Glossary of medical terms associated with cavernous angioma.
Cavernous Angioma Information provides an introduction to the
statistics, symptoms, and treatment of cavernous angioma.
Genetics of Cavernous Angioma provides a basic explanation of
genetics with information about the particular genetic mutations
that can cause the hereditary form of this illness.
Community and Support
Building community is an essential part of the mission of
Angioma Alliance. Angioma Alliance offers a number of
opportunities for getting to know others with cavernous angioma
in order to share information and support.
1. We host a Community Forum that has a bulletin board format.
This is the most active section of our website. On the Community
Forum, individuals describe their experiences, share their
questions, and even organize face-to-face get-togethers. The
forum is available in English, Spanish and Portuguese. The
Community Forum Instructions page is a step-by-step guidebook
for those who are new to us.
2. Every two months or so, we host an online Chat that is
focused on a topic of interest to our members. This allows
members to communicate in real time and ask questions of each
other and of the moderator.
3. We host an email list server that allows you to communicate
with a group of subscribers via email. You must subscribe to the
list server before posting a message. Each email you send to the
ccm.listserv@lists.angiomaalliance.org email address will be
delivered to all of the subscribers. Use the List Server
Information menu choice to get more information about
subscribing to and using the list server.
4. Our members are able to submit their cavernous angioma
stories in English, Spanish, and German on the site. This allows
visitors to read about other’s experiences without looking
through the forum or list server archives. Choose
Stories from
the menu to read these stories and learn more about submitting
your own.
5. We are developing a support contacts matching system for new
individuals to obtain information and support from folks who
have been with Angioma Alliance for some time. We expect to have
an initial system in place by Summer, 2006.
News
We publish a quarterly Newsletter that is available online in
PDF form. This is where you will find the most recent
information about our activities and about advances in cavernous angioma research.
Angioma Alliance hosts annual Family Conferences that provide an
opportunity for members to meet each other face-to-face and to
learn an incredible amount about cavernous angioma through
presentations given by the nation’s top experts on the illness.
When our members are featured in news articles, we try to get
permission to reprint the articles in our Press Room.
Patient Tissue/DNA Bank and Registry
Angioma Alliance has created its own tissue/DNA bank and patient
registry to help our researchers find better treatments and
possible cures for this illness. Tissue is donated from
cavernous angiomas that are removed surgically. DNA is extracted
from blood donations. Because this bank and registry are held by
Angioma Alliance, many researchers at many labs are able to use
the donations of our members. A single individual’s DNA or
tissue may become part of research that is happening in labs
across the US, and eventually, the world. This page provides the
latest information on the status of the tissue/DNA bank and
registry and instructions on how to join us in this very
important endeavor.
Diagnostic Testing
There are many types of tests available for diagnosis and
treatment of cavernous angiomas. This section provides
descriptions of the tests and their uses as well as providing a
link to a genetic testing service.
Symptoms and Treatment
A person’s experience of cavernous angioma is determined to a
large extent by where in the brain the cavernous angioma is
located. The pages in this section discuss several areas that
have specific symptoms/management issues as well as providing
information about other medical issues specific to cavernous
angioma – hemorrhage, venous angiomas, and radiosurgery, for
example.
Surgery and Rehabilitation
This section is meant to be a helpful guide for those who are
expecting to have surgery. It does not delve into surgery
techniques, but instead focuses on the real life things that may
become important before, during, and after your hospital stay.
Pregnancy and Pediatrics
This section discusses issues that are specific to pregnancy and
to raising children with cavernous angiomas. In the
Pregnancy
section, you will find information on the limits of prenatal
testing, on the debate about labor restrictions, and about risks
to pregnant women who have cavernous angiomas. In the upcoming
Raising a Child with Cavernous Angioma section, you will find
information about genetic testing for children, symptoms in
kids, and managing the challenges of raising a child with the
illness. Finally, in Cavernous Angioma and School, you will
receive information on IEPs and 504 plans with discussion of
issues that are particularly relevant to our children.
Studies Seeking Participants
This section again provides information about our Tissue/DNA
bank and patient registry, but also lists the ongoing research
programs in the US and around the world.
Resources and Links
This section provides links to resources outside of Angioma
Alliance that we have found helpful.
Who We Are
This section is an introduction to Angioma Alliance itself. It
offers an overview of our mission and goals, introduces our
board of directors and scientific advisors, and provides a copy
of our most recent annual report.
Marketplace
We offer our own marketplace with brochures and a variety of
items that can help to raise awareness of this illness. We also
offer DVDs of our family conference, a list of suggested books
that can be purchased through Barnes and Noble (a percentage of
any purchase you make through Barnes and Noble by following this
link will come to us), and a shopping portal through Igive.com
that allows you to help us as you do your regular online
shopping.
En Español and Em Portugues
Our site is available in Spanish and in a limited way, into
Portuguese.
UK Resources
Angioma Alliance UK is an independent branch of Angioma Alliance
formed in 2005 and serving those in the United Kingdom and
greater Europe. Angioma Alliance UK provides a website with an
email listserv and patient literature.
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