NOMID Alliance
Geschrieben von Karen Durrant, publiziert vor 9 Monaten.
Greetings to All,
We are very pleased to be involved in the CAPS community on the www.rarediseasecommunities.org site that is sponsored by EURODIS and NORD. These organizations are dedicated to helping patients with rare disorders and have created this wonderful online site for people with rare diseases from all around the world to meet and share their stories, ask questions and learn about their disorder.
Many patients or family members have found the community online very helpful, and we hope that more people affected by CAPS will come and join us in the coming year! There are many nice features on the site, including current and accurate medical journal articles about CAPS.
By far, the stories posted by the members of the community have helped so many with CAPS to know that they are not alone, and that there are organizations that can help them. The support from members of the community has also been helpful at giving them wonderful support and advice. The rarediseasecommunities.org community is available in multiple languages, so more people now can connect from various parts of the world that were unable to easily communicate before this site was developed.
EURODIS and NORD invited The NOMID Alliance (www.nomidaliance.net) and AMWS/CINCA (www.amws-sinca.eu)to help with this community, and we are pleased to have developed a relationship of friendship and support between our organizations for this project. Members of AMWS/CINCA, a patient-led organization for CAPS in France was instrumental in the early planning of the www.rarediseasecommunities.org site, and AMWS/CINCA is the first patient organization in Europe focused on CAPS.
The NOMID Alliance is dedicated to increasing awareness, care and treatment for CAPS and other autoinflammatory diseases worldwide. We are a US-based 501 (c)(3) non-profit public charity that was established in 2006. We help patients and medical professionals learn more about CAPS, get then connected with specialists, advocate for patients, and try to improve access to necessary medications so all patients with CAPS can have the opportunity to have improved care and treatment.
There are still many areas of the world where patients with CAPS have no access to the proper medications that can treat CAPS, so we are working with various patient groups and specialists to encourage pharmaceutical and government agencies to facilitate the approval for the use of these medications for CAPS patients in research and/or prescriptive use around the world.
We also have an informative CAPS medical guidebook available in print or online as a PDF file to download, and soon we will have a Spanish version available online. Our website is being redesigned and will be translated into Spanish and French in the next few months. We hope to expand the number of languages on the site in the next year.
We are very happy to see more new patient groups for CAPS developing around the world, and hope that we can all work together more to help more people with these rare diseases. In addition, we are trying to become more involved in helping patients with other rare autoinflammatory diseases, and welcome collaboration with other organizations.
Thank you for your support, and we hope that you will join us on rarediseasecommunities.org soon.
Sincerely,
Karen Durrant RN, BSN
President –The NOMID Alliance
www.nomidalliance.net
Karen and Paul Rivière from AMWS CINCA met in Carquefou, France
in July 2011.
Geschrieben von Karen Durrant, publiziert vor 9 Monaten.
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