http://blog.patientslikeme.com/2011/11/08/patientslikeme-and-rare-project-unite-to-find-and-connect-one-million-rare-disease-patients/ PatientsLikeMe - Patients helping patients live better every day Wed, 16 May 2012 21:26:58 +0000 http://wordpress.org/?v=2.7 hourly 1 http://blog.patientslikeme.com/2011/11/08/patientslikeme-and-rare-project-unite-to-find-and-connect-one-million-rare-disease-patients/comment-page-1/#comment-83221 Connecting with other patients diagnosed with rare diseases like AIH. « Ask Me About AIH (autoimmune hepatitis) Wed, 09 Nov 2011 19:36:54 +0000 http://blog.patientslikeme.com/?p=5118#comment-83221 [...] Connecting with other patients diagnosed with AIH is the reason I’m blogging about autoimmune hepatitis.  I wanted to connect with other AIH patients to hear about your AIH journey.  I wanted to share my AIH journey and information with you.  There’s another good resource for connecting with patients diagnosed with rare diseases.  Here’s the link to The Value of Openness: [...] [...] Connecting with other patients diagnosed with AIH is the reason I’m blogging about autoimmune hepatitis.  I wanted to connect with other AIH patients to hear about your AIH journey.  I wanted to share my AIH journey and information with you.  There’s another good resource for connecting with patients diagnosed with rare diseases.  Here’s the link to The Value of Openness: [...]

]]> http://blog.patientslikeme.com/2011/11/08/patientslikeme-and-rare-project-unite-to-find-and-connect-one-million-rare-disease-patients/comment-page-1/#comment-83161 Wendy Vachon Wed, 09 Nov 2011 13:54:59 +0000 http://blog.patientslikeme.com/?p=5118#comment-83161 This is so great that this happeneded. The more collaboration that is done possibly will lead to bigger and better health issues for everyone involved. My daughter who is 14 and was injured in a soccer game last October ended up getting RSDS and POTS which at that time I had no idea what that was. Now we have created a facebook fan page to help support others as there is no support for kids on this and trying to find information you really have to do your research which there needs to be more of since there is no cure for these two syndromes. Thank you again for getting together. This is so great that this happeneded. The more collaboration that is done possibly will lead to bigger and better health issues for everyone involved. My daughter who is 14 and was injured in a soccer game last October ended up getting RSDS and POTS which at that time I had no idea what that was. Now we have created a facebook fan page to help support others as there is no support for kids on this and trying to find information you really have to do your research which there needs to be more of since there is no cure for these two syndromes. Thank you again for getting together.

]]> http://blog.patientslikeme.com/2011/11/08/patientslikeme-and-rare-project-unite-to-find-and-connect-one-million-rare-disease-patients/comment-page-1/#comment-82925 pete clifton Tue, 08 Nov 2011 20:11:09 +0000 http://blog.patientslikeme.com/?p=5118#comment-82925 I have been a member of plm for quite a while.When my neuro retired my new one informed me that I didn't have MS but have had neuromyelitis optica for the past 8 years!! I was wondering if this disease would be one of the rare diseases that would be followed in this partnership with rare diseases? thanks pete I have been a member of plm for quite a while.When my neuro retired my new one informed me that I didn’t have MS but have had neuromyelitis optica for the past 8 years!! I was wondering if this disease would be one of the rare diseases that would be followed in this partnership with rare diseases? thanks pete

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