Oxalosis and Hyperoxaluria Foundation
Rating: 4.91 stars 22 22 reviews
Location: 201 E. 19th Street, 12E New York NY 10003 USA
Target demographics: all affected by Primary & Enteric Hyperoxaluria
Direct beneficiaries per year: hundreds of children and adults throughout the world.
Geographic areas served: all parts of the World
Programs: research grants, education, awareness and advocacy.
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4 people found this review helpful
My son was diagnosed in1987 when no one knew anything about the disorder. The doctors encouraged me to call OHF I did and I have spent hours on the phone with the staff telling me what we needed to do and telling me to be an advocate for my son Joshua. I have learned so much from them and they have always been there for us. I lost my son a little over a year ago but still stay involved with OHF because these people mean so much to me and I do believe one day there will be a cure.
OHF is an excellent organization that helps bring funding and attention to a condition that affects a small population in a very severe way. OHF provides a voice for those that otherwise wouldn't have one.
My son was diagnosed 11 years ago with PH1. His doctor told us to connect with OHF.org I spent hours if not days on the website absorbing information and connecting with other families who child(ren) had the same disease. OHF provided a soft landing with open arms and hearts when our life was turned upside down. LOVE OHF.
my son has ohf, and this site is a awesome place to get info. ask ? and get answers. we love this site. And knowing we r not alone fighting this battle. t.robbins
We LOVE OHF! It's our main source of information about our son's Hyperoxaluria! We send our family and friends to OHF to learn more and help us support and understand all who have been diagnosed with Hyperoxaluria! Thank you OHF non-profit for being an amazing source of information and guidance!!
OHF is a wonderful small non-profit organization that provides guidance, awareness, information and research dollars to PH patients and information to their family and friends. I am personally involved with three beautiful children who suffer from this rare generic disease. I am so happy there is an organization out there that is so so knowledgable on information regarding Hyperoxaluria especially after learning that many doctors know little about this rare disease. I am so glad OHF is out there to refer my family and friends to for information.
If I had to make changes to this organization, I would...
none I can think of at this time except to make people aware of what they do through postings and Ads in publications.
When was your last experience with this nonprofit?
OHF is my go-to for information on Hyperoxaluria. It is also the site that I refer my family and friends to when they want to know about my son's condition. Everyone I have talked with at OHF has been very kind and supportive.
Three words -- Saved. My. Life.
Great organization that is committed to patients. They are very responsive and helpful to patients.
The OHF is an amazing organization that provides me with information and guidance when my daughter first diagnosed with PH1. Oxaluria and Hyperoxaluria conditions being so rare it is great to have a place to go to get support and information. I love seeing up to date info on this group of disorders as well as the inspirational quotes on facebook daily.
OHF is a great small organization that works extremely hard to raise awareness of PH and much needed research monies for PH suffers. PH is a very rare genetic disease that even many doctors have never heard of and OHF is working hard to change this. They are extremely helpful and there to help you at any time. Also very active in getting government grants to help fund research as well as hold many events to raise dollars. Very lucky to have them fighting to find a cure for PH suffers!