Best non profit fro rare disease Primary Hyperoxaluria...The Little Engine that Could...and WILL fond A Cure!'
My daughter was born with PH3. This organization has helped us understand this rare disease. It has educated and informed us and has helped us educate and inform others. We have made life long connections and friendships with others who share similar stories. Their fundraising and conferences and updates all help our community. They are truly a great cause and do this selflessly. Whenever we need an answer or a recommendation we are sure to reach out & they are always willing to help.
Two of our children have PH1 and OHF has been our lifeline for over 15 years. The passion and dedication of everyone at OHF is what drives the fight to end the Hyperoxaluria diseases. OHF respects the patient voice and hears our needs. They make sure we never fight alone and that no one is left behind. OHF is our strongest advocate and source of education and research. We have hope for a future because of all that OHF has done and who they are.
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Oxalosis and Hyperoxaluria Foundation has been a critical piece to our support team. Two of our children were diagnosed with Primary Hyperoxaluria Type 1 (PH1). Our youngest son (Matthew) went into end stage renal failure at 5 months old and needed daily dialysis until he received a liver and kidney transplant when he was 2 1/2 years old. Our oldest child (Molly ) is "stable" and living with this disease. It is very frustrating to have two children with a disease that is very rare and most doctors having little or no knowledge about the condition or its treatment. We are very fortunate to have knowledgeable specialists who treat them now, but it wasnt always that way. We relied heavily on OHF for information that would help educate the local physicians on treatment for our children until we could get to our specialists. OHF provided us with answers and with a sense of community. They let us know we were not alone and helped put us in touch with other families on similar journeys. Sharing accurate information is critical to getting the best treatment options for each patient. OHF helped us with that. Our children presented with their disease very differently from each other. OHF has helped us understand the differences in our children's disease and answers to questions about what is being done to research it. They help families deal with the entire process and give us hope for a better future. The hard work and dedication of OHF will lead to a treatment and cure for PH patients. The research they are doing gives us hope that our daughter might be able to find a treatment before her condition worsens. That hope is everything.
OHF continues to be a trusted and invaluable resource for us as we navigated over 15 years of my son living with PH1. Especially over this last year while my son was in end stage kidney failure and waiting for his donor organs, OHF was by our side supporting us through each high and low. Thank you Kim and Julie!
My son was born with Primary Hyperoxaluria type 1. Finding out he had this and being a young 22 year old mother back in 1990 was a very scary thing. First time he went into kidney failure he was six months old. I didn't know what any of this meant and what was going to happen to my first born. I heard about OHF and contacted them. I was cryin and scared. OHF was there for me. They gave me information and helped support me. I was absolutely amazed and greatfull! I cannot thank them enough!!! My son is now a Doctor and wants to help others. I believe OHF, all of their support toward finding a cure and for their patients has contributed toward my son's healthy and happy life. OHF is number one!!! THANK YOU!!!
The OHF combines advocacy, patient support, research funding and public awareness about oxalosis and hyperoxaluria--both life-threatening diseases that can shorten or end the lives of its young victims. Through OHF, grants support new research into the causes, treatments and hopefully, eventual cures for these devastating diseases. OHF is a lifeline for those affected--patients, families, physicians and caregivers. OHF has helped our daughter, diagnosed at age 19, survive and thrive into her late 20's as a successful professional, happily married with a bright future ahead of her. Thank you, OHF.
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Both of our children were diagnosed with PH1 in 2008. Our daughter has been through more than 15 hours of surgeries and lost half her kidney function due to this disease. Thanks to the OHF, our family has found excellent health care, ongoing education and incredible support over the past eight years. I can't imagine how much more difficult this journey would have been without the OHF. We are so fortunate to have such an outstanding nonprofit working to cure this disease and help all those it impacts.
I always check oxalosis and hyperoxaluria foundation information
I receive very useful information from this foundation. Many people thanks including me for their devotion.
We The OHF are "The Lil Engine that Will" indeed find a cure for this rare orphan disease. of Primary Hyperoxaluria. I thank you Kristy for sharing your story...about your children, as my own child Natalie has this same disease. We would be nowhere without the OHF! Godspeed to a cure...with HOPE!
Our son, Jackson was recently diagnosed with PH1. My husband and I immediately began looking for resources when we came across OHF. OHF has given us hope during a dark and uncertain time in our lives. We feel like we are receiving the best treatment for him between Mayo and OHF and have quickly became very educated on PH1. We are very excited to attend our first patient education day to network with others and continue to learn even more about our newly beginning journey.
Our daughter was diagnosed with PH2 almost 10 years ago and OHF has been a huge support for us. They are such caring and compassionate people.
We love their patient meeting days when we get to learn more about this disease and meet other families.
In 2008 our lives changed and OHF became part of our family. They corresponded and worked hand and hand with the medical team treating my husband at the time. They were there every step of the way from the biopsy that had to be handled with great care to get from Texas to the lab to be tested many miles away to the double transplant of a liver and kidney. Sadly my husband lost his battle with PH in 2009. But my son and I are so appreciative and blessed for all the support and helpful information we received and still receive today from OHF. Our hearts overflow knowing that everyone at OHF is deligently working in memory of my husband and my son's father and for everyone else affected by this to one day find the cure.
The OHF has given our family a sense of community and strength in challenging times. In 2010, when Kate was diagnosed, my husband and I attended the patient day in NYC. That day provided information, support, and more importantly, a feeling that although we may stumble along the way but that we are not alone in this journey. About a year later, Addie was diagnosed too. I never forgot that day in NYC. I walked up to the check-in at the conference and when I said my name, others at the desk knew my children by name and it was a little surreal. By providing opportunities for education, networking and support, my family has grown in knowledge. We are very grateful to the Oxalosis and Hyperoxaluria Foundation for its assistance and may we all be more resilient as a result.
OHF has been an amazing support for my two sons whom were diagnosed with PH2. They were able to assist with information and they shared our story to help others through their own journey with this rare disorder. I'm thankful to have them available.
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!
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
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.
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.
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!
I participated in OHF's first annual walk in Raleigh, NC and thought the walk was the perfect length, the perfect location, and really well-organized. It was a great family outing for all ages, and most importantly, raised awareness and money to fight this disease. I know that OHF has helped my family immensely and you can tell by the enthusiasm of the leaders how passionate they are about this organization.
The OHF is a great organisation. It provides funds for much needed research into diagnosis and treatment of primary hyperoxaluria as well as information and support for affected patients and families.
It has been my privlege to work with the outstanding staff and volunteers in OHF. The first walk to raise needed funding for OHF research in NC was held in Raleigh last Fall. As a former executive director of a non-profit, I was amazed at the outstanding job the staff did in carrying out this first-time event. They were extremely well organized. The event was well planned and the morning went as smoothly as anyone could have hoped. The OHF staff is composed of caring, dedicated and enthusiastic professionals. As mother of a son diagnosed with OHF in 1995 as a senior in college, I will be forever indebted to this Foundation, its staff and volunteers for the job they do to help stamp out this rare disease that impacts the lives of so many young, vibrant children. Many thanks to all!! Sandra Drum, mother of Jon Anglemyer
I suffer from Primary Hyperoxaluria. The incredibly hard work done by the folks at the OHF have raised thousands of dollars to seek out a cure for this devastating illness. It is not a well known disease, but this charity does a great job of not only raising awareness in the community, but is working hard to find a cure. As someone who has suffered and, thanks to a kidney and liver transplant, is recovering from this disease, I know how depressing it can be when faced with a diagnosis of Oxaluria. The folks at OHF do a great job of helping oxaluria patients stay in touch with each and help answer questions about their problem. Through this network we have formed an excellent international support group. They also work closely with doctors and scientists to find a cure.
I am a new addition to the OHF team and have been completely in awe of the caring and dedicated members who spend a significant amount of their time trying to help raise awareness and fight this disease. Being new, I still have a lot to learn but I have come onboard with previous expertise within the online advertising world and hope to use that knowledge to increase OHF.org's online presense. Currently, I'm working with the director and program manager of the foundation to think of creative ways to leverage OHF's strengths and bring it to the forefront of users who search for diseases and/or related subjects to the organization.
The Oxalosis and Hyerpoxaluria Foundation works hard every day to find a cure for this silent and life threatening disease. The families and patients involved are working tirelessly to find better treatments and a cure so that people no longer have to suffer from never-ending kidney stones. The group really works hard at building a community and increasing awareness for PH. Research is the key to finding a cure for this disease and the OHF never stops in this mission.
Dedicated members who put out great effort to help find a cure for this disease. The Foundation is oriented to helping educate and support patients and their families. Money is raised to support research to cure and treat hyperoxaluria.
A group of dedicated parents of afflicted children banded together to work with scientists and clinicians to provide a framework for patients and professionals to receive the best care in the world, and to allow innovative research that is leading to a cure. The organization employs highly motivated individuals who are tireless in their pursuit of excellence.
As a parent of a child with Primary Hyperoxaluria, I truly appreciate the support and comfort I get from the OHF. From the very begining the organization helped us to get the best medical care available.In addition, the access to patients and families with the disease provided and invaluable tool from which to learn. Early on it became clear that more research would be needed in order to hopefully find a cure for this disease. Both my husband and I joined the OHF team in hopes that one day our efforts would cure and prevent this disease.
I have been a patient for over 20 years. The work the organization does is outstanding. The doctors and research at the Mayo Clinic is wonderful. Please support this organization.
The OHF is the ONLY foundation in the world dedicated to finding a cure for Oxalosis and Hyperoxaluria. The OHF is working to help save lives and fulfill the promise to end PH forever by empowering people, ensuring quality care for all and energizing science to find the cure. The OHF provides patient, public and professional education and has funded millions of dollars in research.