Tip:
Highlight text to annotate it
X
Hi, My name is Karen Durrant
and I am President of the NOMID Alliance, that was formed in 2006 to help
patients with Cryopyrin Associated Periodic Syndromes,
also known as CAPS 0:00:11.579, 0:00:14.999 and other Autoinflammatory diseases.
We were formed because many...
I happen to be the parent of a child with
a form of CAPS
and I had met a lot of other patients and family members
and parents
of children with these diseases.
We realized there's a real need to have more awareness
and an organization that would help advocate and address issues or needs that the
patients were having,
and facilitate information to doctors
and other medical professionals and even having resources for the
parents to share with their children's teachers
and there
was not anything like that.
There was no organization at the time in the United States for these
diseases
and many other families had been looking
and seeking
for somebody to help. And we
had not found it.
Everyone kept saying that we needed a non-profit and so we stepped
forward to do that.
I started with a group of other
board members
who were either parents of patients with these diseases or patients themselves
as well.
We have grown
in the past five years to be
a resource for people. Not just in America, but for anywhere in the world and
anyone who is in need for information about
these disorders.
Our main objective is to
help get the information patients need, help them get connected with
providers that can help them.
Access to care and treatments, clinical trials and also
if they're having trouble with
the healthcare system, which is very common.
We try to give them some suggestions, help them navigate, sometimes also
we actually do get involved and advocate directly.
We have been
doing that for a number of causes.
Sometimes
with campaigns to appeal to the government,
also,
various agencies.
Collaborating with other organizations,
to improve things for rare diseases in general.
We have a website, www.nomidalliance.net
you can also call us on the phone (415) 831-8782
and we also
have Facebook
page: NOMID Alliance.