One of the biggest tools we have to fight hyperoxaluria and oxalosis is the power of human connection. That’s why we are launching the first ever awareness week from Nov. 9 – Nov. 14. The goal is to rally the hyperoxaluria community together to spread awareness and show support for this devastating family of rare diseases.
Educational and fundraising events will be held to help create a ripple effect of positivity and empowerment for not only those living with hyperoxaluria, but their loved ones, too. Early diagnosis, effective management, and treatment are important to the long-term health of your kidneys, which is why we are spotlighting hyperoxaluria and raising awareness this week!
Join us the this week to learn more about what the community is doing to make strides against hyperoxaluria and spread awareness about the disease among patients, medical professionals, government officials, the general public, and industry, we aspire to create brighter tomorrows for those impacted by primary hyperoxaluria, oxalosis, and related hyperoxaluria kidney stone conditions.
Virtual Balloon Initiative
Thousands of healthcare professionals, patients, and their families have already launched balloons with the aim to share knowledge so that we can provide better outcomes for patients around the globe.
Launch Your Virtual Balloon
If you know someone affected by hyperoxaluria, or you yourself are affected, help raise awarness by launching a virtual balloon and share it among the community. Your balloon will travel the virtual globe and send you postcards when it reaches pivotal locations tied to the hyperoxaluria community.
Always know your child and if things seem off take them to your pcp regularly
Please give us your support.
We are very close to finding a NEW drug for my rare disease (Primary Hyperoxaluria Type 2). Please help and donate if you can xxx
Some of the most generous, courageous, and resilient people I know just happen to live with PH! I am grateful for everyone in this global community — from researchers to physicians, parents, amazing kids, and OHF!
There is hope. I have PH1, and I am confident that a cure will be found. PH is rare, but every life matters, and in the not so distant future we will have our cure. There’s a lot to look forward to.
Thanks for spreading awareness!!!! What an amazing week, #2020HyperoxaluriaWeek!
To drink water
hello, thanks to the research that gives us hope for a better future!
To all the PH patients keep being strong and courageous and know that you have so many people behind you and supporting this rare disease. A cure will be found!!! Love my PH patient, Mayah Bloch.
Together we can conquer.. there’s strength in numbers..
Thank you for the amazing work you do 😊
For everyone living with enteric or primary hyperoxaluria, let’s hope the research being conducted right now results in a brighter, easier and happier life in the near future.
More people need to understand this better, to improve there well being
Secondary hyperoxaluria may affect more of us than we think; eating high oxalate foods can be your route to more than just kidney stones. I am helping people to reduce their oxalate intake, and seeing health improvements of all kinds!
I am Primary Hyperoxaluria Type 1. I have been dealing with oxalate stones since I was four. never knew that this disease could bring me on dialysis and have to go for liver kidney tranplant. but I am hopeful and full of life.
We hope that with early diagnosis and new treatments, pain, dialysis and transplants will be history for all PH patients.
hope for the future!
Early diagnosis means good prognosis!
The patients and carers are the real heroes! We’re all here to learn and help however we can. Thank you OHF for bringing us together and for shining the spotlight on the work we have to do for our patient communities.
Take charge of your health. It’s OK to ask your doctor questions. If your having problems find out why?? Don’t just treat the symptoms. Special test might be required to discover underlying issues.
We are stronger together…
FROM: Gunna and Alexander
I am committed to supporting PH research and Drug development. I am hopeful for a CURE!
Drink a lot of water! I’m up to 2.5 liters daily!
Thank you OHF for all that you do to serve the PH community.
Health and trained doctors wish you!
I didn’t find out that I had hyperoxaluria until I was 57 years years and went into renal failure. I have a sister who died as a result of this disease in the 1980’s but her doctors were not aware that it was a genetic disease. Subsequently I received two living donor transplants from my other two sisters. The liver transplant cured the disease and the kidney transplant gave me freedom from dialysis. This was over 15 years ago and the three of us continue to do well.
Hola mi nombre es Alba soy mama de una bebe llamada Candela de 10 meses con HOP1 diagnosticada a los 2 meses, actualmente estamos a la espera de trasplante hepático y próximamente diálisis tenemos esperanza que llegue pronto su trasplante hepático y en un futuro el renal mucha fuerza y positividad
There is hope on the horizon
We are stronger together! Being aware about the needs of patients with hyperoxaluria and spreading information about the disease among patients, medical professionals, government officials, the general public, and industry, we hope to cupport improvement of quality of life for the patients! Dorica Dan – Rare Diseases Romania
Every day counts for children with Primary Hyperoxaluria!
This is not a dream. Together, we can find a cure for primary hyperoxaluria.
To the childhood disease.. we need to find a cure.
Sending this balloon in recognition of the courage and determination shown by patients with hyperoxaluria and in the hope that all patients can in the future access testing, diagnosis and effective treatment.
This is a devastating disease. I encourage physicians to consider this as a potential diagnosis in cases of otherwise unexplained occurrence of kidney stones. Screening and early diagnosis are key to helping patients.
PH is rare and effects few people. However all those people deserve to have a cure. I’ll stand by my baby girl (17) fighting for a cure every day. 💚
You are your child’s biggest advocate. Never stop fighting for what they need! <3
Fighting for a cure!
I celebrate the courage of those with hyperoxaluria, the support of their families and loved ones, and the commitment of the nurses and doctors who care for them.
It’s fun to skip stones but not to pass them.
Thank you to everyone who has helped individuals with primary hyperoxaluria! Thank you to those with PH and their families who have bravely shared stories; to researchers and physicians who have dedicated their lives to furthering the understanding of this disease, the development of treatments and the care of PH patients; to families and volunteers for raising awareness and funds; to biotech companies for launching therapies; and to the OHF for bringing all of the talents together and continuously lifting us up. Deep appreciation to all of you from Georgia! 🎈❣️
Lets spread the word about Hyperoxaluria all around the world.
Thank you to the OHF for all that you do to serve the PH community.
Those who have this rare disease and their caretakers need hope – and support. Thanks to the OHF and the pharmaceutical industry there is hope. It’s up to those of us who know someone affected by this disease to offer our support, whatever form that may take. Here’s to spreading the word about Primary Hyperoxaluria – and a message of hope!
I launch this balloon with tremendous respect and awe for the PH patient community. May these messages provide you with a sense of support and of hope!
Communication with your healthcare provider is the first step toward managing any disease, and rare disease especially requires asking lots of questions. You are your own best advocate!
Never give up!
I launch this balloon with tremendous respect and awe for the PH patient community. May these messages provide you with a sense of support and of hope! Katie Sacco, Alnylam
Let’s change the outcome for this disease!
PH Patients and caregivers are strong and resilient. They deserve an advocate and thank you to OHF for their dedication to these families.
How amazing it is that i have witnessed, as a nurse in over 30 years in pediatric nephrology, the great change in the diagnosis and treatment of hyperoxaluria in Jerusalem, Israel. To all my patients and families, sending you all a virtual hug!
The American Kidney Fund is proud to support #2020HyperoxaluriaWeek and the important work of driving awareness of the connection between hyperoxaluria and the kidneys.
Increasing awareness and early diagnosis of primary hyperoxaluria in children with kidney stones is extremely important.
Patients with calcium oxalate stones should be worked up. If hyperoxaluria is detected it should be thoroughly investigated.
I am proud to be working at Dicerna, alongside OHF, to bring a treatment to all PH patients!
Wishing OHF continued success in leading the way to raise the visibility of oxalosis and hyperoxaluria so that viable and effective therapies will be developed for this community!!!!
We are winning our battle against this devastating disease. Please join us in helping us make it over the finish line.
In honor of Natalie Berra! Survivor! Daughter!
What a wonderful way to increase the awareness about Hyperoxaluria!!! I am honored to work with families to understand Primary Hyperoxaluria and to work for Dicerna who is working to bring a therapy to all PH. By increasing awareness, more folks and clinicians will assess the potential need for further exploration of their symptoms. Congratulations to the OHF for working to raise the awareness.
I am proud to be part of the effort to educate, humbled by the stories of patients and caregivers who have been afflicted, and hopeful for the future that treatments may bring to this devastating disease. Happy Hyperoxaluria Awareness week!
What an exciting time!!! So many potential treatments are on the horizon!
Did you know that the majority of these treatments were only made possible by the >20 years of research effort funded by the OHF? Patients, families and many others have helped to raise >$20 million dollars for the development of unique cell lines and animal models. These amazing cellular, biochemical and structural studies have helped us to understand the molecular basis of PH and to develop novel therapeutic strategies. Moreover, the OHF development funds have been highly successful in garnering follow-on support from the National Institutes of Health.
We could not have done all of this without the tireless dedication and hard work of our families and supporters in partnership with basic science, clinical and biotech researchers. We thank you all and look forward to a brighter future!
Lost a dear loved one and would like to spread awareness. Maybe it can save a life.
In Rebecca’s memory – You are not forgotten. 💜
Knowledge is strength. Improved understanding has been the basis of all our advances in the diagnosis and treatment of primary hyperoxaluria.
There is hope!!!
So happy Chinook Therapeutics can partner with OHF and support the important work to find a cure for hyperoxaluria.
This disease is becoming more prevalent. Anyone can find out they have it later in life and it can be devastating.
Together we can make a difference in patients and families suffering from hyperoxaluria!
Not all kidney disease is the same. Please support our cause!
Providing in depth information is the most important point to improve awareness of the disease! I launch this balloon to keep connection around the globe, from North to South, from West to East. Stay connected, stay strong!
Sending love to all the families that are enduring such a horrid and rare disease xxx
I believe that modern science will help PH patients to cope with their illness!
If you or someone you know gets kidney stones it might be that they have hyperoxaluria. It’s a very rare disease and it can be savage to its’ sufferers. Please educate yourself and those you love, just in case.
Help patients and scientist to find cure or remedies for hyperoxaluria.
Stay strong and united!
For all PH1 patients to keep strong and keep faith in the amazing scientists and doctors around us. Thank you OHF for all of the research you have conducted into hyperoxaluria so far, I hope one day we will find a cure for this terrible rare disease. Shout out to my Mum in the attached picture who always keeps smiling through everything. Sending all my love and support to families going through this same journey. ❤️
Skies are stormy and the wind is howling, but our PH balloons are released and they battle against every obstacle and form of resistance. Just as the disease battles within each patient, there will be set backs and challenges and the fight to soar can be difficult, but it is worth every exhausting twist and turn. Never lose hope, you are never alone and will always have a team supporting you and lifting you up.
An insidious disease that affects the whole family because our son is affected. Dialysis daily for hours.
And now, with Covid its more than hard.
Arff! Have a great week everyone! Spread the word about Hyperoxaluria! I love balloons!
My mom was diagnosed with this after my sister gave her kidney, in an effort to give her a quality of life, off of dialysis. It was when that kidney failed that she was diagnosed with this. She would need a liver and then a kidney to remedy this. She died at 59. I miss her everyday. This pic is of my husband and mom, they shared a birthday and a deep connection. I will fulfill my dream of becoming a Pharmacist on May 1st, she would be so proud and I’d give anything to have her there.
Mom, I love you. 💕❤️😘
Never give up, if you know there is something wrong, pursue the health professionals until you get answers and stay positive.
Thanks for all of the work you do OHF! We are so proud of the work you have done and continue to do! Keep fighting!
Thanks to all at OHF for the amazing work you do. Keep fighting the fight! ❤️
I am so glad to be part of the OHF and work toward greater awareness for patients with hyperoxaluria. Stay strong and keep fighting!
PH1 is tough, but so are we! Jackson and Lincoln won’t let PH slow then down. They will always have a special bond with having this.
Never stop fighting. Know that people are on your side, and love you. You’re never alone.
I hope that anyone who has PH has an easier road than I did and that everyone finds hope in a better tomorrow.
to hope for meaningful and impactful medicine that help patients and caregivers.
Chinook is proud to sponsor OHF and the Hyperoxaluria Awareness Week. I am sending this balloon in hopes that patients across the globe with all forms of PH are able to access testing, diagnosis, and treatment.
Having listened to the PH Patient Focused Drug Development meeting with FDA this fall I am so hopeful for PH patients and families and caregivers that awareness and understanding of PH is increasing dramatically. Will be thinking of PH families all week, especially the courage and determination of young patients!!!
Hyperoxaluria is a rare but important genetic condition and I hope doctors are looking for it so patients can receive the best care.
Sending you a big hug of courage from Rhode Island, USA.
For the strong families who are there to support their loved ones through their journey
Look behind the stone for all the brave people living with primary hyperoxaluria type 1
What a great way to raise awareness and connect patients around the world! Congratulations to OHF for launching this important initiative. Let the community’s voice be heard!!
I am honored to participate in the first-ever Hyperoxaluria Awareness Week. I launch this balloon with the hope that many will take the time to learn about hyperoxaluria and that patients and caregivers will feel the support of a passionate community working to improve the quality of life for those affected by hyperoxaluria.
It is an honor and privilege for us at Alnylam to have come to know and learn from a community of patients and families living with primary hyperoxaluria type 1 who are continuing to be brave, resilient and full of hope. Congratulations on launching the first-ever Hyperoxaluria Awareness Week! We are proud to partner with the OHF and the entire patient community.
I launch a balloon for my 6 year old who drinks lots of water every day and is on clinical medication trial for a disease with no cure! She is a hero.
So excited to launch my balloon to spread awareness for Hyperoxaluria! We are all advocates and our voices matter! Can’t wait to find out where my balloon will land!
My hope is that Primary Hyperoxaluria has a spot light put on it. Fundraise, spread the word, search it up…& let’s work to find a cure.
We at Dicerna wish you a great week and great advancement in the science for PH and EH.
Anyone with kidney stones or nephrocalcinosis should be investigated for Primary Hyperoxaluria.
To bring the entire hyperoxaluria community together so that our voices are heard everywhere!
I wish to spread awareness for everyone affected by hyperoxaluria. I hope my balloon joins the others in the effort to spread the word throughout awareness week and beyond.
Let’s take a leap of faith to help spread the word about Hyperoxaluria!
I want to spread my message about hyperoxaluria so that together we can shine a beacon of light for patients and their families around the world. Together, we can move mountains!
Keeping spreading awareness!
There are patients all over the world affected by hyperoxaluria — you’re part of a huge community!
I hope to spread the word around the world!
Resources for Hyperoxaluria
Below please find a few helpful resources for understanding, managing, and living with hyperoxaluria.
I Can & I Will
At the 2019 OHF International Hyperoxaluria Workshop, the OHF community (families, caregivers, patients, researchers, physicians, industry partners and friends) came together to share that together we are strong!
The Oxalosis & Hyperoxaluria Foundation (OHF) is dedicated to supporting awareness, understanding, and treatment of primary hyperoxaluria, oxalosis, and related hyperoxaluria kidney stone conditions. When you donate to OHF, you support the research that will bring hope to the lives of people with hyperoxaluria and oxalosis and their families.