Comments for The Children's Rare Disease Network http://www.crdnetwork.org/blog Tue, 27 Jul 2010 23:27:06 +0000 hourly 1 http://wordpress.org/?v=3.0 Comment on NIH Takes On New Role in Fight Against Rare Diseases by Tweets that mention NIH Takes On New Role in Fight Against Rare Diseases | The Children's Rare Disease Network -- Topsy.com http://www.crdnetwork.org/blog/nih-takes-on-new-role-in-fight-against-rare-diseases/comment-page-1/#comment-353 Tweets that mention NIH Takes On New Role in Fight Against Rare Diseases | The Children's Rare Disease Network -- Topsy.com Tue, 27 Jul 2010 23:27:06 +0000 http://www.crdnetwork.org/blog/?p=3209#comment-353 [...] This post was mentioned on Twitter by Dr_Ran, orphantoday. orphantoday said: NIH Takes On New Role in Fight Against Rare Diseases http://ff.im/-ont9f [...] [...] This post was mentioned on Twitter by Dr_Ran, orphantoday. orphantoday said: NIH Takes On New Role in Fight Against Rare Diseases http://ff.im/-ont9f [...]

]]> Comment on The Tour de France and Testicular Cancer by Catherine Calhoun http://www.crdnetwork.org/blog/testicular/comment-page-1/#comment-350 Catherine Calhoun Sun, 25 Jul 2010 18:40:36 +0000 http://www.crdnetwork.org/blog/?p=3167#comment-350 Excellent post Howard, I wish I had any answer to offer . . . I guess we keep working together and sharing stores and change will come? Excellent post Howard, I wish I had any answer to offer . . . I guess we keep working together and sharing stores and change will come?

]]> Comment on Organ Donors, Thalassemia, and Appropriations by Tweets that mention Organ Donors, Thalassemia, and Appropriations | The Children's Rare Disease Network -- Topsy.com http://www.crdnetwork.org/blog/haema/comment-page-1/#comment-340 Tweets that mention Organ Donors, Thalassemia, and Appropriations | The Children's Rare Disease Network -- Topsy.com Wed, 21 Jul 2010 15:35:13 +0000 http://www.crdnetwork.org/blog/?p=3107#comment-340 [...] This post was mentioned on Twitter by Howard Liebers, Dennis Cryer. Dennis Cryer said: RT @marbleroad: New Post: Organ Donors, Thalassemia, and Appropriations http://bit.ly/b0DVk9 #raredisease r http://bit.ly/cqjFpW @crdnetwork [...] [...] This post was mentioned on Twitter by Howard Liebers, Dennis Cryer. Dennis Cryer said: RT @marbleroad: New Post: Organ Donors, Thalassemia, and Appropriations http://bit.ly/b0DVk9 #raredisease r http://bit.ly/cqjFpW @crdnetwork [...]

]]> Comment on A Great Win for Rare Diseases in U.S. Senate Appropriation Bill by Organ Donors, Thalassemia, and Appropriations « MarbleRoad’s Blog: Rare Diseases and Disorders; Public Health; and National Service http://www.crdnetwork.org/blog/a-great-win-for-rare-diseases-in-u-s-senate-appropriation-bill/comment-page-1/#comment-339 Organ Donors, Thalassemia, and Appropriations « MarbleRoad’s Blog: Rare Diseases and Disorders; Public Health; and National Service Tue, 20 Jul 2010 22:22:23 +0000 http://www.crdnetwork.org/blog/?p=3102#comment-339 [...] has also been an exciting month on the hill, as Kakkis Everylife Foundation reported July 16 [...] [...] has also been an exciting month on the hill, as Kakkis Everylife Foundation reported July 16 [...]

]]> Comment on A Great Win for Rare Diseases in U.S. Senate Appropriation Bill by Organ Donors, Thalassemia, and Appropriations | The Children's Rare Disease Network http://www.crdnetwork.org/blog/a-great-win-for-rare-diseases-in-u-s-senate-appropriation-bill/comment-page-1/#comment-338 Organ Donors, Thalassemia, and Appropriations | The Children's Rare Disease Network Tue, 20 Jul 2010 18:31:28 +0000 http://www.crdnetwork.org/blog/?p=3102#comment-338 [...] has also been an exciting month on the hill, as Kakkis Everylife Foundation reported July 16 [...] [...] has also been an exciting month on the hill, as Kakkis Everylife Foundation reported July 16 [...]

]]> Comment on A Great Win for Rare Diseases in U.S. Senate Appropriation Bill by Orphan Disease Today - 希少疾患薬優遇措置に向けた予算案 http://www.crdnetwork.org/blog/a-great-win-for-rare-diseases-in-u-s-senate-appropriation-bill/comment-page-1/#comment-335 Orphan Disease Today - 希少疾患薬優遇措置に向けた予算案 Sun, 18 Jul 2010 05:02:57 +0000 http://www.crdnetwork.org/blog/?p=3102#comment-335 [...] http://www.crdnetwork.org/blog/a-great-win-for-rare-diseases-in-u-s-senate-appropriation-bill/ [...] [...] http://www.crdnetwork.org/blog/a-great-win-for-rare-diseases-in-u-s-senate-appropriation-bill/ [...]

]]> Comment on The View From This Side… by mooneyequalsmc2 http://www.crdnetwork.org/blog/the-view-from-this-side/comment-page-1/#comment-331 mooneyequalsmc2 Fri, 16 Jul 2010 19:06:26 +0000 http://www.crdnetwork.org/blog/?p=2506#comment-331 I followed Gavin's journey, through your blog, for quite some time. Your family's love and adoration for Gavin was so palpable through your words and photos. All of you were truly an inspiration to me during a time when I was feeling low about our own journey. So good to see you here! Mindy .-= mooneyequalsmc2´s last blog ..<a href="http://mooneyequalsmc2.wordpress.com/2010/07/15/25-12-months-old/" rel="nofollow">25 1-2 months old</a> =-. I followed Gavin’s journey, through your blog, for quite some time. Your family’s love and adoration for Gavin was so palpable through your words and photos. All of you were truly an inspiration to me during a time when I was feeling low about our own journey. So good to see you here!

Mindy
mooneyequalsmc2´s last blog ..25 1-2 months old My ComLuv Profile

]]> Comment on Parents helping kids and kids helping parents, a meet in the middle. by mooneyequalsmc2 http://www.crdnetwork.org/blog/parents-helping-kids-and-kids-helping-parents-a-meet-in-the-middle/comment-page-1/#comment-330 mooneyequalsmc2 Fri, 16 Jul 2010 18:59:44 +0000 http://www.crdnetwork.org/blog/?p=3077#comment-330 I understand. I often forget that this journey is about living life and having fun just as much as it is about the disorder/disease. well written post! Thank you! I understand. I often forget that this journey is about living life and having fun just as much as it is about the disorder/disease. well written post! Thank you!

]]> Comment on European Conference on Rare Diseases 2010 – From Policies to Effective Services for Patients by Tweets that mention European Conference on Rare Diseases 2010 – From Policies to Effective Services for Patients | The Children's Rare Disease Network -- Topsy.com http://www.crdnetwork.org/blog/european-conference-on-rare-diseases-2010-from-policies-to-effective-services-for-patients/comment-page-1/#comment-328 Tweets that mention European Conference on Rare Diseases 2010 – From Policies to Effective Services for Patients | The Children's Rare Disease Network -- Topsy.com Fri, 16 Jul 2010 11:49:28 +0000 http://www.crdnetwork.org/blog/?p=3099#comment-328 [...] This post was mentioned on Twitter by haaaaah, orphantoday. orphantoday said: European Conference on Rare Diseases 2010 – From Policies to Effective Services for Patients http://ff.im/-nNCjY [...] [...] This post was mentioned on Twitter by haaaaah, orphantoday. orphantoday said: European Conference on Rare Diseases 2010 – From Policies to Effective Services for Patients http://ff.im/-nNCjY [...]

]]> Comment on Official Shoe for Rare Disease Day 2011, Denim Keds? by sarahgoshman http://www.crdnetwork.org/blog/official-shoe-for-rare-disease-day-2011-denim-keds/comment-page-1/#comment-326 sarahgoshman Tue, 13 Jul 2010 21:26:23 +0000 http://www.crdnetwork.org/blog/?p=3054#comment-326 I'd buy a pair! I’d buy a pair!

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