The Myositis Association: http://myositis.org/
This is a fantastic information and support site that anyone that has Myositis or wants to know more about our disease must visit. I can not tell you how much this site and the message boards there helped me when I first learned I had Dermatomyositis and it continues to do so today. It is a site I visit several times a day.
The people on the message boards are like family. We each live with the disease and the problems it brings us each day. A section is provided for JDM, IBM, DM/PM and General. You can ask them ANY thing and you will get a real life answer.
You do not have to join the TMA to view their information or to particpate in their message boards, but joining the TMA is inexpensive and will provide you with even further resources as a patient. Most of the money on a full membership goes to research. For me the highlight of joining was that I recieved accesss to a list of others with the disease in my general location. Each area has a Keep in Touch (KIT) leader that host get togethers. I finally wasn't all by myself with this disease!
There is so much information...too much to list here. You just must check them out!
Partial List of Quick Facts about TMA:
- Interacts with nearly 20,000 myositis patients and their families and friends.
- Hosts a highly visible website that has more than 320,000 hits annually.
- Acts as the forum for consensus and partnering among myositis researchers worldwide.
- Provides nearly 5,000 physicians with patient information materials and referral materials.
- Presents the latest news on myositis treatments, research and coping skills by way of its Annual Conference, bringing together more than 300 patients, families and experts to learn from specialists and meet with people who share common concerns.
- Offers 65 support groups in the U.S. and overseas for patients and their caregivers to exchange information and share experiences about coping with myositis.