Oxalosis and Hyperoxaluria Foundation
Rating: 4.92 stars 26 26 reviews 1,905
201 E. 19th Street, 12E New York NY 10003 USA
The Oxalosis and Hyperoxaluria Foundation (OHF) is a voluntary, not-for-profit health organization established in 1989 under IRS Code 501(c)3. The OHF was founded in 1989 to seek the cause, improve the care and treatment and discover a cure for Oxalosis, PH and related stone disease. Since then, the OHF has been and continues to be a global leader throughout the PH community. The OHF helps educate and provides support to patients, professionals and the public to better understand Oxalosis, PH and related stone disease. All programs are supported by contributions from individuals, commerce and industry, unions and foundations, clubs and organizations, and bequests and memorials. Contributions are tax-deductible within the limitations prescribed by the Internal Revenue Code.
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
research grants, education, awareness and advocacy.
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Reviews for Oxalosis and Hyperoxaluria Foundation
My sister was on dialysis at 2 years old in 1984 and passed away 9 years later due to PH1. At 21 years old in 2001 my kidneys failed due to it and at first I refused dialysis because I didn't want to suffer like my sister did. A friend went online and found information from OHFs site that there was a treatment option of a combined kidney and liver transplant. I received my transplants in 2004 and continue to look forward to a long, healthy, and happy life. I'm grateful OHF was there and has continued to be there to provide valuable information and a sense of community for such a rare disease.
our five year old daughter was recently diagnosed and OHF has been there to answer questions and provide amazing support!
OHF has been a constant source of support, information and reassurance over the last 8 years. When the doctor first suspected that our 19-year-old daughter had Primary Hyperoxaluria, we immediately Googled the term and found the OHF. Between OHF and the Mayo Clinic, we feel we have an incredible network of caring professionals who have connected us with other patients and families and with the international research community working to find a cure. We feel so fortunate that such a rare disease has such a strong foundation dedicated to education, advocacy and support for patients and their families.
Our son was diagnosed with PH2 aged 3, unfortunately the information in the UK has been misleading and there appears to be a lack of knowledge as there isn't many patients! I decided to do my own research and came across OHF which has been a lifeline for us as a family. We've become friends with other families and learnt so much more and that is down to this amazing organisation Thank you to everyone x
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.
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