Access for all
Your Right
Your Fight
Your Future

November 7-12, 2022
Hyperoxaluria
Awareness Week
Raising awareness and generating change for people worldwide living with hyperoxaluria, their families and caregivers.

US
My hope is that every family with a primary hyperoxaluria connection has access to care, treatment, and diagnosis. Spread the world to help make this possible!
FROM: Mariella

US
My hope is that all patients will have access to life saving treatments around the world.
FROM: Kim

US
I’m inspired everyday by this community to keep working towards a world without Hyperoxaluria! Everyone join #Hyperoxaluria Week 2022! Together we can make a difference!!!
FROM: Julie

US
In addition to access to care, I wish for additional access to education!
Publications, research and data on Primary Hyperoxaluria (PH) is so limited and I hope one day information about PH, specifically Type 3, is more accessible. Trying to educate our family and friends on our daughter’s PH3 diagnosis has been difficult as our own knowledge is so limited and we have little supporting resources to share.
I am so thankful for the education the Oxalosis and Hyperoxaluria Foundation provides to this community!
FROM: Mariah
PK
I would like to especially aware parents of developing countries that don’t ignore persistent nausea and vomiting of your infants, toddler and young kids. I feel parents are the main life saver to early identify symptoms and report to doctor. And being a parent, ask doctor for investigation. As in my case my daughter’s symptoms were totally ignore by health team since her birth, no investigation done and once her severity increases she ended up into a formation of unusual calcium oxalate stone. Wishing you a healthy lifestyle to all hyperoaxluria.
FROM: Sehrish

IQ
We are a family suffering from ph1 .. my son died of this disease .. and my wife is currently suffering from kidney failure. And my 8-year-old daughter is suffering from this disease, but her condition is currently stable because of the treatments she takes and a lot of fluids
FROM: Nabil

US
My fervent hope is that everyone afflicted with PH1 around the world will one day have access to life changing drugs, as my dear friends have been fortunate enough to receive.
FROM: Rick

US
I am in awe of the incredible perseverance and dedication of this community. Thank you, OHF, for all that you do to support patients and families around the world. I am inspired by your work and the patients that you serve. Alnylam Pharmaceuticals is humbled and proud to partner with you for Hyperoxaluria Awareness Week 2022!
FROM: Cara

US
My hope is that every family and every patient afflicted never give up…be brave and speak out about the condition, your experience, the highs, the lows, and share knowledge of resources.
My desire is for the World to know there is hope!
FROM: Jennifer

US
Access means the world to us! It means our son has the chance to go to school, play sports, have sleepovers, and be a kid. It means he has experts working behind the scenes to provide him with the best treatment possible while he lives the life a 9-year old deserves.
FROM: Courtney

US
To embrace the rare and never stop advocating for a cure. Childhood to adult, opportunities are there. Be LOUD and STRONG throughout the journey to understand. Much love to my Special BOYS! Your Mommy loves you.
FROM: Jamie

US
There is hope and there are resources for your families! With a lot of prayers, connections, and advocating, my two oldest boys (10 & 9) are on drugs that are truly HELPING! One is in a clinical trial, the other is on an FDA approved drug. Don’t stop fighting for your kiddos, it does get better! Join as many advocate groups as you can and never stop sharing your stories.
FROM: Taylor

US
I have a daughter who is 11 now and her PH is under control, we are very fortunate. I’m Hoping for world where everyone has access to treatment for Primary Hyperoxaluria. Too many people are not able to access medications, life saving dialysis and kidney/liver transplants.
FROM: Mariella

ZA
I believe and see a future with a cure that will benefit those inflicted. We as the community are hopeful, that this is not the end. Things will get better, and we shall all rejoice in the end. Let’s all work towards beating this as a community. I lost my son from PH. However today I am part of this community for LIFE.
FROM: Mantsha Jane

US
The PH Community continues to inspire me every day in my work at Novo Nordisk/Dicerna and it is exciting that the Community has involved itself with companies that are working on various treatments. Keep Hyperpoxaluria Awareness going!!!
FROM: Dave

GB
I hope for everyone with PH to have early and continuous access to adequate medical care and perhaps in a relatively short period of time to find a definitive cure for this condition.
FROM: Sergio Camilo

US
As a scientist at Alnylam, I just wanted to thank the PH1 community for inspiring us each day!! You are always in our thoughts.
FROM: Dave

LB
to make treatment accessible to all kids with PH1 all over the world and help them live happy and healthy lives.
FROM: Mia

US
The true Hero’s of this world, are those who actively research, drive to, stand up for, and do everything possible for the one’s they love, when they suffer from a rare disease that goes unidentified or treated. To you and those you love, we stand behind you, aside of you, and with you every step of the way!
FROM: Kimberly

US
I wish to educate others who have never heard of this rare genetic disorder and bring light to the cause in hopes that with more people aware the better we can fight to find a cure!
FROM: Connie

US
That everyone around the globe has access to treatment, medication, dialysis, and life saving transplants. Too many people are unable to to access these things currently and we need to change that.
FROM: Mariella

CA
Abigail is a thriving three year old because she has had access to lumasiran, a novel drug in the treatment of PH1. Without it, her life trajectory would be significantly altered. Please consider Abigail’s well-being in your reimbursement criteria for public funding.
FROM: Jennifer

US
The OHF team is here for you. All that we do is to improve the lives of patients and families dealing with PH, across our wide country, north, south, east and west!
FROM: John

US
I hope that people whose lives are affected by PH always have a platform to share their voice and be heard. Thank you OHF for all that you do! I will strive to do my part in clearly communicating the scientific research being done.
FROM: Aparna

US
“New beginnings are in order, and you are bound to feel some level of excitement as new chances come your way.” —Oscar Auliq-Ice, author
May the advances in discovery and treatment for the community continue!
FROM: Trista

US
I am proud and privileged to work along side the PH community and OHF to bring important solutions to the community living with PH!
FROM: John

IN
This is an abridged submission. Please visit www.hyperoxaluriaweek.ohf.org/story for Kanishka’s full and very powerful story.
In January 2009 – June 2009 a black shadow came to our life with heart breaking news that Kanishka had Primary Hyperoxaluria Type- I. Finally, on 19.1.2011 we received a call from IKEM that Kanishka has been gifted by God for having combined transplantation. On 20.1.2011 very early morning around 5.30 am Kanishka had been taken for his dialysis. But on 19th May 2011 Kanishka didn’t wake up after his dialysis. Therefore, as a bereaved mother I have a request to all the medical practitioners, researchers to identify a better solution than combined transplantation which is really not an ultimate solution. At whatever time I wish to write something about Kanishka the first thing comes in my mind: CARE. He was a very caring personality. To fulfill the cherish idea of a great boy, as a mother and as a parent we established a foundation in 2013 to improve the lives of rare kidney stone disease and Hyperoxaluria for better care and outcomes.
Once again thanks to Kim Hollander for your understanding and giving an opportunity to share our only beloved son Kanishka’s journey with PH.
FROM: Nibedita

US
We are a community filled with determination and strength. We need to continue to work together to ensure EVERYONE has access to treatment and care for their specific needs, no matter who they are or where they live. This disease affects everyone in the family and can disrupt our lives in ways that are difficult to recover from, HOWEVER we do not have to let it happen without a fight. We are all responsible to advocate for ourselves and our families. Do not settle and never give up. Uncertainty and desperation can motivate us to fight against the biggest challenges. We have a wonderful obligation to each other to keep fighting and pushing forward to ensure we all have the opportunity to live a life free of PH. Lets continue to work together to make good things happen.
FROM: Kristi

GB
I hope to see (geographical) fair and equitable access to treatment and care within the coming years. Access to services that improves overall quality of life for both the patient and parent/caregiver.
FROM: Jess

US
I struggle when I was Nepal.i never give up and hope so I am here.i connected with PH family.
FROM: Govinda

AU
Having access can mean so much to so many people. Having a great foundation like ohf is extremely handy as I have met many amazing people who understand what I am going through because of them and I am also able to help them however I can from across the globe. It is because of amazing things like this that one day we can hopefully find more cures for diseases like ours and many others.
FROM: Alisha
Create Your Postcard
Share Your Hope for Access for All!
Spread hope and solidarity across the world! Design a postcard to share your dreams for the future as a member of the hyperoxaluria community.
Connect With the Community
Live Stream Patient Workshop and Afterparty Session
Join us on Saturday, November 12, 2022 from 10 AM EST to 1 PM EST for the interactive live stream program.
Download Materials
Find here all the materials you need to raise awareness for #Hyperoxaluria and instigate change for people living with this rare disease. Download the Digital Toolkit for social media posts, posters, a facebook frame and more!
HAW 2022 Calls to Action
Facebook Frame
Join us in spreading Hyperoxaluria awareness on facebook! In the toolkit you will find a facebook frame to spread awareness on Facebook.
Make Your Facebook Frame
Be Part of a Team to Share What Access Means to You

Join a Team Today and Make a Difference Tomorrow
Join team Diagnosis, Treatment, Or Care to share what access means to you! Personalize your page and then share your campaign!
Wear #Hyperoxaluria Blue and Share Your "Why" on Social media
Wear #Hyperoxaluria blue share your story to spread awareness for Hyperoxaluria all around the world! Use the template in the toolkit to share your “why”! Don’t forget to @OHF, if you would like the OHF to reshare your post!

Wear blue and share your story on social media!
Share on Social
Share on social media with #Hyperoxaluria to spread awareness. Don’t forget to follow @ohfoundation on instagram, @OHFTweet on twitter, and TheOHF on facebook and sign up for updates!
Highlights
Digital Toolkit | Share on Social Media | Wear Hyperoxaluria Blue | Send A Postcard | Join Team "Access for All" |
---|---|---|---|---|
Build Awareness using the #Hyperoxaluria Awareness Week Digital Toolkit with the awareness frame |
Be a #Hyperoxaluria Hero on Facebook, Trend on Twitter, and go Viral on Instagram, and share your story |
Show your true colors! Wear #Hyperoxaluria Blue |
Send a postcard and share what #Hyperoxaluria access means to you! |
Join a team to support Access for All and raise funds to end #Hyperoxaluria today |
Faces of Hyperoxaluria
Hyperoxaluria can present at any age and at any time. High levels of oxalate and recurrent kidney stones in adults or any kidney stone in a child are some of the most common signs that you might have hyperoxaluria.
Meet some of the patients and families affected by hyperoxaluria!

Sponsors
Thank you to Hyperoxaluria Awareness Week’s Sponsors!
Inspiring Champion Sponsors


Connecting Partner Sponsors

Partner Sponsors
