Page 2 seems to get messed up on this rareshare. Feel free to call me 415-831-8782 if you want to talk, or want to connect with the other family that goes to Vanderbilt. She is not on this forum, but would love to connect with you.
The NOMID Alliance and StopCAIDNow are separate organizations, but we are both working to help patients with autoinflammatory diseases. The NOMID Alliance started with mostly helping patients with CAPS, but we have expanded our scope in the last few years, and have been doing more outreach and support for other autoinflammatory diseases.
Lisa and I have recently connected, and plan to work together on some projects. Lisa started in the last year with her org. and has been developing some exciting projects to increase awareness about autoinflammatory diseases. She has a child with Blau, but is working to help all autoinflammatory diseases.
The NOMID Alliance use patient stories (identity protected) for letter campaigns to government agencies, drug companies, and awareness projects to improve patient access to medications and care.
We are currently seeking patient stories involving patients having trouble with getting coverage for the necessary medications for CAPS or other autoinflammatory diseases for a very important project that will help patients greatly to have a better chance of getting the medications that they need.
Another dear friend that runs nomidsyndrome.com has been collecting patient stories for years, along with photos, and we have a direct link to their site. They started in 2000, and have mostly CAPS stories. They are working on updating the site now. We do not feel the need to replicate something that they have already done so well, and prefer to collaborate. It is worth a look.
We have been very involved with the content and patient support on rarediseasecommunites.org which is a wonderful online community that is growing. We are trying to help the CAPS and FMF communities to grow, and have also pointed patients towards some other online support groups. (rarediseasecommunities is moderated and sponsored by NORD and EURODIS-the big rare diseases orgs)
The NOMID Alliance was started in 2006 as a 501c3 non-profit in the US, but we help patients worldwide.. We began with increasing awareness about CAPS, and also other autoinflammatory syndromes, but have done the most for CAPS awareness. We are very involved worldwide in patient advocacy, awareness, connecting people to specialists, clinical trials, or each other. We are also a leading resource for medical professionals.
We help lots of patients,plus many doctors and other medical professionals every year. We also have been at medical conferences in the US and worldwide to increase awareness for these conditions, and inform specialists of our services for patients. We also have published a CAPS guidebook, and it is now going to be available in Spanish.
Our new website will launch next month, and it will have expanded information and resources about many autoinflammatory diseases, medical resources, and ways for patients to connect. It will also be in Spanish and French to help more patients learn about these diseases.
The website will have some patient artwork and quotes that will show how their lives have changed after the proper diagnosis, care and treatment for their disease. these are messages of hope, with some touching artwork (by children with these diseases) to those still at the start of this process with getting answers.
I hope that info helps. We enjoy working with various organizations to help towards the same goal, and I invite you to explore these other sites to connect with more patients too. There is also http://health.groups.yahoo.com/group/nomidsyndrome/ that is an active forum for CAPS patients, but most are parents of a child with CAPS, or other similar conditions. There are some that have children that have variant forms of CAPS, or an overlap of more than one autoinflammatory disease on the group, and people are very welcoming and helpful.