My Nonprofit Reviews
Carmen R.
Review for 1p36 Deletion Support & Awareness, Bend, OR, USA
I am a member of the 1p36 Deletion Support & Awareness group. This is an excellent source of information. As many doctors are not familiar with this diagnosis. I am grandma of Alisha Rassi who is 8 yrs old with 1p36.3. She was diagnoise at exactly 14 months. As far as I am concern and per doctors info she is the only case (till date) in Puerto Rico with this medical condition. I have found that many of the parents in this group are more family with this condition than medical doctors. I count it a blessing to belong to this group. We are more than friends but a family.
More Feedback
I've personally experienced the results of this organization in...
Learning each day more about this diagnosis. Speak to Alisha's mother and keep her informed since she does not speak English. I also go to all her medical appointments and take all the information regarding 1p36 since like I mentioned before this condition is not known here in Puerto Ciro.
If I had to make changes to this organization, I would...
I would not make any changes since I feel the moderator of the group is doing an excellent job.
