Post by IPH NET on Jan 19, 2013 17:36:45 GMT -6
To all:
I have been working with Rare Connect, a collaboration between NORD (National Organization for Rare Disorders) and Eurodis (NORD's European counterpart) for recognition of IPH as a Rare Disease. While the emails and my opinions have been rather loud because of the other 7000 rare diseases, only a few are profitable enough for the non-profits to take under their wing, IPH-NET and NORD/Eurodis have worked out an understanding that there could be a group for Idiopathic Pulmonary Hemosiderosis on their Rare Connect site. There are very few (especially with 7000 plus rare disorders) groups of this stature. They are asking me for our participation in the group and I think this would be one more way for IPH to get consideration in the Rare Disease Community. Plus the recognition that IPH would receive may make a difference. There will be no change in the way this board is ran, no commitment, financial or otherwise, and your names will not be given to ANYONE. YOUR Privacy is paramount to any other group on the internet. You will have the decision to join the discussion, just as you do here and on the IPH facebook page for those who do. Please let me know what your thoughts are and any misgivings you may have. It is a travesty that NORD/Eurodis does not recognize IPH as a rare disorder, but this may be a step in that direction if we pull together. Your input is always welcome. Let me know what you think.
Deepest Regards,
IPH-NET
I have been working with Rare Connect, a collaboration between NORD (National Organization for Rare Disorders) and Eurodis (NORD's European counterpart) for recognition of IPH as a Rare Disease. While the emails and my opinions have been rather loud because of the other 7000 rare diseases, only a few are profitable enough for the non-profits to take under their wing, IPH-NET and NORD/Eurodis have worked out an understanding that there could be a group for Idiopathic Pulmonary Hemosiderosis on their Rare Connect site. There are very few (especially with 7000 plus rare disorders) groups of this stature. They are asking me for our participation in the group and I think this would be one more way for IPH to get consideration in the Rare Disease Community. Plus the recognition that IPH would receive may make a difference. There will be no change in the way this board is ran, no commitment, financial or otherwise, and your names will not be given to ANYONE. YOUR Privacy is paramount to any other group on the internet. You will have the decision to join the discussion, just as you do here and on the IPH facebook page for those who do. Please let me know what your thoughts are and any misgivings you may have. It is a travesty that NORD/Eurodis does not recognize IPH as a rare disorder, but this may be a step in that direction if we pull together. Your input is always welcome. Let me know what you think.
Deepest Regards,
IPH-NET