A SUMMIT SCHEDULED FOR RARE DISEASE ADVOCACY

2 Corinthians 9:15

Thanks be unto God for his unspeakable gift.

http://www.globalgenes.org/rarelist?gclid=CjwKEAjwkMWgBRCJ1L_wypbX0wkSJAC3Xio2wMLpmPaX9FqFMebXQpQM6l5nbSpU2y8w6q7JFrMxKBoCdirw_wcB

http://globalgenes.org/2014-rare-patient-advocacy-summit/

Through many attempts to assist others... not only with those I know who have the rare disease of Idiopathic Hypertrophic Cranial Pachymeningits...but those also considered with "idiopathic" rare diseases of any type....this summit is an answer to my prayers.  The rarity of the most recent findings in my own family's auto immune diseases, also fall into this.

Around a month ago, after my early morning devotions and prayers, I felt led to start a Face book Group ...
" Idiopathic What?"  His guided moment for my Purpose in this journey had reached me.
The process to offer any information available is time consuming. My own research is ongoing.  Slowly, the patients, their care givers, supporters, and professional medical workers, are coming together here.  The interactive "helps" are gathering.

God's timing is perfect.  Experiences He has given me, sustains that understanding.  Now, in addition to my very rare "idiopathic" diagnosis, we have encountered new family diagnosis' as well.  One of my daughters and two of my nieces,( all born the same year, but in different environmental areas of the world), have been diagnosed with an auto immune disease of the thyroid.  One has Grave's Disease, the other two have Hashimoto's Disease.  Three of my grandchildren are still being diagnosed,  one has developed a possible bi-polar issue, another has several allergies, and the other has an extremely low blood platelet count. Now, more than ever before, the genetic disposition of auto immune diseases in our family, has become prevalent.

Many of those who read my blog may be of more importance than ever before.  In my prayers, I continue to ask for His continual guidance towards the betterment of life for all concerned.  His creation of us has a definite purpose, the most important, is to share His Love.  With good health towards our body, soul, and spirit, His purpose will be met.

I am so very thankful for His Grace.