Chordoma Foundation

The Chordoma Foundation has provided valuable information to me. Their list of expert doctors is essential before starting treatment. Patient navigators will help whenever needed. Their conferences are great sources of information and fellowship.

Witam,
Odkąd znalazłem w internecie stronę Fundacji Chordoma naprawdę poczułem nadzieję, że jest instytucja i ludzie którzy mogą mi pomóc. Znakomita, profesjonalna strona internetowa zawierająca ogromna ilość informacji o tym rzadkim nowotworze, życzliwi ludzie którzy w każdej chwili służą radą i pomocą.
Informacje o badaniach nad lekiem na chordomę dają wielką nadzieję.
Skorzystałem już z kontaktów z lekarzami polecanymi przez Fundację. Na bieżąco utrzymuję kontakt z niezwykle profesjonalną i życzliwą Menedżerką programu Chordoma Foundation ( dziękuję Kimberley!).
To dla mnie ogromna pomoc i wsparcie również psychologiczne. Mam kontakt z innymi pacjentami dotkniętymi tą chorobą. Dzięki Fundacji prowadzę obecnie szerokie konsultacje (również zagraniczne ) nad dalszym sposobem leczenia struniaka.
Dziękuje wszystkim! Jestem bardzo wdzięczny.
Waldemar Mizera

The Chordoma Foundation is the most extraordinary resource to have as a patient. Because the disease is so rare, it is easy to feel a bit lonely... but conversely, when you have the Chordoma Foundation bringing people together, then it really feels like a family with a shared experience. The Foundation provides amazing insights and advice, and is pioneering in its clinical research. And the staff are fantastic, responding to questions quickly and professionally, and also building relationships between experts and patients.

Amazing that the foundation has the most current information for patients, researchers and surgeons on this rare disease.

Chordoma, you hear the word and have no idea what the dr is talking about. You listen but it doesn’t register. You go home thinking what is this. Am I going to die soon?
Google chordoma and find chordoma foundation. So much info, so much help. Found me the best dr and hospital in MA. So many friends made, so much info. So much encouragement. Anytime I have a question I ask it and in no time I have many replies. It also makes me feel good when someone asks questions and I can answer them and tell them about my journey. If I hadn’t found the chordoma foundation I probably wouldn’t be around today.

In 2013 my young daughter was diagnosed with chordoma, a one in a million disease. Living in Southern California, we had access to great cancer treatment centers. The issue after meeting with many of them, they all suggested different treatment plans. I found the Chordoma Foundation and their Patient Navigator help me narrow it down to three centers who treat chordoma routinely, as well as offering an immense amount of information for us... unlike Google.

I've watched the Chordoma Foundation expand its patient services and educational resources every year since, not to mention the number of ways they're collaborating with globally recognized experts and researchers to advance viable treatment options.

My son Frankie was diagnosed in 2010 we didn’t know much about Chordoma. In 2015 it returned and the Chordoma foundation supported us they were great in helping with questions and with doctors.

I was diagnosed with a Chordoma (a rare bone cancer) in June of 2021. I was confused about what to do next. I found the Chordoma Foundation and they helped me find a Chordoma expert to review my case. This doctor and his team provided proton radiation, surgery and arranged physical therapy for me. The Chordoma Foundation was instrumental in getting me the best care possible.

When I was operated on for a neck tumor, it was assumed it was metastatic breast cancer. No it was a chordoma. My experienced surgeon had only seen two others in his long career.

We were immediately in touch with the Chordoma Foundation (CF) with its wealth of accurate information. But its list of CF approved doctors was literally a life saver. My daughter and I, an ICU nurse, were able to interview nine doctors and surgeons as to the next steps. But, in my opinion, my nurse navigator, Andrea, was there along side us - to listen, advise, help understand and be the most valuable resource. The research being financed by the CF has already shown results.

Having had breast cancer, there's lots of organizations but none of them do in one place with such compassion and focus what the CF does for its clients.

We are an orphan disease - one out of a million - but we have the CF to guide us all.

The Chordoma Foundation was an amazing resource in my Chordoma journey. The website provides great information that helps with navigating this rare cancer.

Without the resources and personal advice we received for our son's chordoma he / we would have been lost !!!

I was diagnosed with chordoma in 2019, and I felt incredibly intimidated by such a rare diagnosis. I found the Chordoma Foundation online and it changed my life- suddenly I was not alone! I had information, resources, and community. I was able to learn about my diagnosis and connect with other patients who were able to provide me with encouragement, emotional support and, most importantly, hope. I feel so grateful to know that the Chordoma Foundation is actively working towards finding cures for chordoma- they even have their own lab, CF Labs, 100% dedicated to chrodoma research! I don't know where I would be today if it was not for the Chordoma Foundation. I no longer feel alone or hopeless in this journey.

I was diagnosed with chordoma in early 2021, the Foundation has provided lots of solid guidance and allowed me to build connections with others who have been through the same experience. The pace at which the CF continues to move and progress research is extremely hopeful and means the world to me as a patient. They are a creative and driven charity and I feel reassured by those who are so committed to improving outcomes for those with chordoma.

The Foundation continues to be a powerful force in the world of cancer research pushing the envelope of how information is shared and patients are informed of new advances. The foundation has given patients support through its Peer Navigation Program, the Doctor Directory, the Medical Board and in the international presence it now has in many European and Asian countries. The Chordoma Foundation continues to serve as an exemplary organization for which many, including myself, are grateful. Stemming from its mission, to its leader (Josh Sommer) to the Board and Staff know that this foundation is worthy of your support.

When I was diagnosed with chordoma in 1997, there were very few resources available. Most doctors had never even heard of it, there were limited treatment options, and no community whatsoever. The Chordoma Foundation has made great strides in all three of these areas, and I'm proud to be a part of it.

It's incredible to think that nearly 20 years after my successful treatment, patients may be experiencing even more effective treatment with better outcomes. Because of the efforts of the Chordoma Foundation and others, I believe that in my lifetime we will see a cure.

When the surgeon gave us the news that our 13 year old daughter had Chordoma following an arduous, 12 hour long surgery, my heart broke. I knew little of this exceedingly rare form of cancer, but the internet led me quickly to this Foundation and all of its resources. I learned as much as I possibly could to help me understand what we were facing, which helped not only in providing direction, and knowing what questions to ask, but also identified experts to seek out that treat chordoma on a routine basis. We also found that we were not alone, and now could benefit from support from around the world. A year later, we were at their annual conference and we learned what this foundation was doing in being a beacon for organizing research, cataloging tissue samples for testing and genetic sequencing...all in an effort to come up with a cure. That was 2014. Here we are, years later and the energy and drive by the Chordoma Foundation and all associated with it, has grown dramatically. I can't say enough about the Foundation and its people who have dedicated their time for this worthwhile cause.

The Chordoma Foundation has been a lifesaver for me and for numerous other patients I have steered toward the astounding repository of resources and support they provide.
Not only do they engage in cutting edge research targeted toward uncovering a cure, they take patients by the hand and help them navigate safely through the various icebergs of this disease.
Kudos to the Foundation and to the tremendous team of dedicated personnel who are bent on bettering the lives of others.

The Chordoma Foundation has an immense impact on the chordoma community. As an adolescent chordoma patient and now young adult survivor, the foundation has always been eager to listen to my perspective on the chordoma experience for adolescent and young adults and how unique that experience is. I have felt truly valued by the Chordoma Foundation and they have allowed me to share my story with so many. My parents and I were invited to a meeting with the Chordoma Foundation board in which we shared our story and were asked for feedback to help improve services. This organization is SO community led, the input of those impacted by chordoma is highly valued and truly influences the foundations work. In having conversations about the adolescent young adult chordoma experience, I was presented with the opportunity to lead the Adolescent Young Adult Chordoma Support Group as the Patient Engagement Specialist. This group has been not only beneficial for me, but has been resoundingly appreciated and enjoyed by all participants. Being able to connect with others my age who understand my experience so fully has been the most rewarding and healing experience.

Simply put, the work of the Chordoma Foundation resulted in saving the life of my husband. The foundation serves patients and their families in a direct manner through its patient navigation services, whose help was instrumental in the positive outcome of my husband's treatment. In addition, the foundation's work on research in order to ultimately cure chordoma, speaks to the overall mission of this amazing organization. The staff is knowledgeable, kind and hard-working. We are grateful to the Chordoma Foundation and all that it has done and continues to do with regards to changing the game for the chordoma community. I currently support the Chordoma Foundation as a volunteer for the organization, helping to give back in some way all that we have received as a family.

I don’t know if I would be here today without the help of the Chordoma Foundation. They helped me every step of the way from diagnosis through my surgery at UPMC.

My Wife Patricia was diagnosed with C2-3 Chordoma in July 2016 after her first Surgery was done for questionable Schwannoma. Diagnosis caused the need for another Surgery to remove more tumor. Asked a Pathologist where I work about Chordoma. He referred me to Chordoma Foundation for more help and information.
The Foundation helped me find approved Chordoma Doctors for second opinion. It is a great support Group and a place for education and appropriate treatments.
Randy Akers

These guys are life changing for those who need the help. They assist in many ways for us, the patients (and also the caregiver) in direction, advice, reference and many more. They push research funding which is so missing.

When my 6 year old was diagnosed with metastatic chordoma, the chordoma foundation were the only ones who helped us get answers from the right people. They connect without wanting anything in return, patients with experienced doctors. But also provid a great community to connect with others affected by such a rare disease. Without them we would still feel lost, alone and my son would not be so good taken care of

I have this rare desise, chordoma. It is difficult to get some information in the beginning. Very lucky to have fond the Chordoma Fondation!
(From the Netherlands)

Without the Chordoma Foundation those of us affected would truly be lost. They have provided everything one could need from information, research and treatment trials, to virtual support on many topics. There is nothing else like it anywhere in the world and in my mind they have succeeded in all they set their mind too. Lets hope that soon includes a cure.

My husband was diagnosed with his chordoma cancer in 2015. I attended 2 conferences that the Chordoma Foundation held in Boston, MA in 2016 & 2018. I learned so much about chordoma and what to do in case a recurrence happened. Unfortunately, my husband had a recurrence in 2020 right when the pandemic was going into effect.

I didn’t have as much despair with the second recurrence as I had with the initial diagnosis since I attended the conferences and knew what to expect and how to navigate the next steps. The Chordoma Foundation has held webinars during the pandemic keeping us informed on current treatments and how to manage the disease. The CF has given us hope with their services and funding research. They have brought together patients, researchers, and medical providers. My husband and I are truly grateful for all that they do.

Chordoma Foundation is a great Small foundation but they are so good with helping out Patients who need help and guidance.

I was diagnosed with a sacral Chordoma in March 2020. I live in the second most isolated city in the world. COVID had just hit our country and it became even more isolated. I reached out to the Chordoma Foundation for support, and I am so glad I did. The knowledge and support from this foundation is incredible. Every time I contacted them (12 hours time difference), I would get up the next morning to an answer from one of the staff/ volunteers. I now have a great pen pal in the US thanks to the peer group. We stay in contact regularly talking about how we are coping with this very rare cancer.

After the shock of being diagnosed with Sacral Chordoma over a phone consultation as a 40 year old single mum with no family support I felt lost and devastated. The uncertainty and lack of knowledge and information about this disease made things worse. Thankfully I was signposted to the Chordoma foundation where I found answers to many of my questions and the reliable and up to date essential information needed as Chordoma patient. I remember even using the “questions to ask your doctor” guidance at my first face to face consultation with my surgeon. I am grateful for the Chordoma Foundation and all that they do to help us. I would still feel lost without them.

When I was first diagnosised with Chordoma at the age of 27, I was told Chordoma fell in a grey area when it came to Cancer. AKA the doctors didn't know enough about Chordoma to really know. The Chordoma foundation got me though some dark times.

This Foundation provides education and guidance for those affected by A very rare cancer, Chordoma both patients and family. Without the guidance of the Chordoma Foundation, our son would have undergone surgery by a neurosurgeon who was recommended by our local hospital but in reality might have been a good skull base surgeon, but who had minimal experience with Chordoma. The Chordoma Foundation has a list of vetted Chordoma Experts who have had experience with this cancer that only affects 1 in a million. They have a data base that serves individuals around the world. THe research spearheaded by the CF has lead to new understanding on the trigger of Chordoma (braychurea), and best practices of treatments. Ongoing research will lead to a cure to this cancer that has affected our son. When one contacts the CF for guidance, one receives individualized guidance.

Having a rare disease classified as a cancer but one that behaves very differently and is highly recurrent, its so important as a patient that I have up-to-date information about my disease, how to treat it and manage my care. The CF has gone above and beyond to be there for patients, to educate them, connect them with resources and invest in our future by searching for a cure.

The Chordoma Foundation is amazing.

They have been the sole voice in the world for advancing research, supporting patients and their families in this extremely rare cancer. If not for them, those of us living with chordoma would have no hope of a cure.

When I was diagnosed in 2012 there were almost no clinical trials and no reasonable expectation that a cure would ever be possible. Now, eight years later, there are multiple clinical trials, and the driver of chordoma has been identified, and it is now a question of when, not if, a cure can be found. This is all due to the drive and support of the Chordoma Foundation. They have advanced the cause far beyond what could ever be expected of a small not for profit by encouraging collaboration, open research, and bringing together and supporting the top researchers, scientists and physicians in the world.

At the same time, they have built mouse models, a bio bank and various other much needed tools for researchers, which just didn't exist before.

Finally, their support of the chordoma community is outstanding. Anyone and everyone who contacts them is provided with support - from registries of physicians in multiple countries who specialize in chordoma, to basic or advanced info, to up to date leading edge information, to patient navigators, they have thought it through and help the patient and their caregivers along the journey.

They are an outstanding not for profit and deserve the highest praise and commendation.

Connects patients to doctors and drives the creation of better treatments. Patient navigator service is so supportive.

This foundation is amazing. They've accomplished so much in advancing treatment and research for a such a rare disease, all from starting from scratch. The impact they've had is immeasurable in terms of creating a community and movement to advance the goal of finding a cure.

When my son-in-law was diagnosed with Clival Chordoma I found the Chordoma Foundation. They gave tons of information I didn’t even know we needed. They helped with finding Dr Raza at M D Anderson, with finding accommodations during surgery and most of all, with giving us hope. I’m happy to say Chris’ surgery was a success and he is cancer free. I’m forever great full for the Chordoma Foundation! ❤️

Saves and/or prolongs lives of patients while keeping us informed and hopeful on research and future treatments. Couldn’t survive this cancer without the hands on help of the Chordoma Foundation; the Patient Navigators help find doctors and treatments on an individual basis. Invaluable!

They quite possibly saved my wife's life. After her diagnosis with Chordoma, her surgeon handed us an info sheet from the Chordoma Foundation and basically told her, "Good Luck." Our next step was ravenously consuming the information compiled by the Chordoma Foundation about the disease, and it's treatment. Because of the Chordoma Foundation, within a few days we were more knowledgeable about Chordoma than any doctor in our community. This was followed by talking with their patient navigators, who helped us find not just Chordoma experts, but Chordoma experts who were specialists in my wife's specific set of circumstances. They also helped my wife to be accepted into a Chordoma Clinic at the National Institutes of Health, which put us in contact with, and allowed her to be evaluated by, the very foremost experts in Chordoma treatment and research.

Beyond the specific help they have given our family and many others, the Chordoma Foundation is organizing the scientific community around the goal of finding treatments and ultimately a cure for Chordoma. These treatments may even hold the key to curing a variety of other cancers with a similar weakness. They organize yearly community conferences to keep the community of patients, family, and caregivers in touch with and involved with the doctors treating and researching Chordoma. They raise funds and provide them for research into treatments. The research they have funded has led to significant advances in the understanding and treatment of Chordoma, and could very well lead to a cure.

Without any hesitation, I can say their work has saved my wife's life, and many others. Their work may eventually lead to a cure for a cancer that otherwise required invasive treatment, and few positive outcomes.

Great organization. They helped give my wife Karen Mullane 10 more years of life!! Thank you Dr. Wolinsky, MD. Our family is actively seeking donations for this organization all the time. We are also writing a book from the patients perspective to be published sometime in 2021. It will detail the medical and personal involvement day to day , month to month of the chordoma journey from diagnosis to death. Anyone who needs to talk to someone about their chordoma diagnosis and what to expect is welcome to call me anytime at: 810-333-6933 or email :
jrmullane@gmail.com FORWARD TO A CURE!!!!!!!

Chordoma Foundation helped us find one of the most skilled medical teams in the world for this rare disease. The team was able to do a successful resection of our daughters tumor, something surgeons in her home country said was impossible. We will forever be grateful for the support and help this professional and friendly organisation provided.

My 34 year old husband was diagnosed with a clival Chordoma one month ago. I have to admit that even though we are both doctors, neither of us had ever heard of the word Chordoma before. We quickly realised that our local medical team had very little experience with Chordoma given how rare it is. We felt quite alone going into this scary journey. That was until we reached out to the Chordoma Foundation. Through CF, we were able to access good quality, up-to-date research and within hours we received an incredibly helpful reply from a CF patient navigator. We managed to email expert neurosurgeons overseas and they kindly reviewed my husband’s scans and gave us a plan. With that knowledge, we were able to seek second, third, fourth opinions until we found a surgeon who we are confident in New Zealand to operate on him. Through CF we were also able to join an online community where we received an overwhelming amount of support and help. We cannot thank the CF enough. They are truly life savers.

The CF helped save my sanity and provided much needed guidance when I was diagnosed with sacral Chordoma. The conference’s are invaluable for sharing information between patients, doctors & researchers! The CF is invaluable and continues to strive for a cure!

I have been a volunteer with the Chordoma Foundation since 2016. The dedication of Josh Sommer, all the people affiliated with the Foundation, and all the volunteers is phenomenal! When my husband lost his battle with Chordoma years ago, we were unaware of the Foundation’s work. Now, because of the continuing research by specialists around the world, clinical trials, establishment of the Biobank, the many resources offered, as well as the assistance of the Patient Navigators, there is Hope for Chordoma patients! Donations to this nonprofit truly support the work that is being done to save lives - please donate if you’re able!

Getting diagnosed with cancer is always terrifying, but even more so when the cancer is very rare. I got diagnosed early this year and had no real leads. Then I started looking into the foundation. I finally had somewhere to get information. I had leads about where qualified doctors were located, I had contact information, and I had a support group. Going from not being diagnosed to having a major neck operation in a matter of months can be extremely difficult, but the Chordoma Foundation has made it easier. I am so grateful for the work they have done and the help I have received.

I found the Chordoma Foundation several months after my initial diagnosis and surgery. They have literally helped extend my life as their patient Navigators have been able to guide me to the best surgeons when I had recurrances, and have helped me find and get accepted into very limited clinical trials which have given me hope for a much longer, more fulfilling life. I have no doubt I would already be dead without their support and the research they have funded which has lead to so many clinical trials. I owe my life to the excellent work done by the Chordoma Foundation.

The Chordoma Foundation is absolutely excellent and critical to all patients dealing with this extremely rare cancer affecting 1 in a million. Their ability to push the treatments forward, launch more trials and research this disease is unparalleled. Their work is helping patients to truly live longer, allowing us to have hope for the future, to have hope in future treatments as well as a potential cure and acknowledge the amazing work done by the Chordoma Foundation.

The Chordoma Foundation literally saves lives. I am a patient with this exceedingly rare disease. I reference their website often for the most up to date information and refer others to it for guidance. The Patient Navigators are responsible for advising the patient community and facilitating contact with vetted medical doctors. Before they existed we were truly lost. Alone and with only old information on the internet. They are very responsive to suggestions and work diligently to help find new treatments for this unrelenting disease. They give us hope which is the most important thing.

I have Clival Chordoma skull-based cancer, and I had exhausted all hope and all treatment options. I contacted the Chordoma Foundation and was able to speak to two experts that provided me a list that day of contacts and doctors' phone numbers for other treatments, and within a couple days I was speaking to an oncologist at a major hospital. Within a week I was accepted into a new clinical trial treatment! I am certain that without the Chordoma Foundation I would have thought there were no other treatments available. The Chordoma Foundation is literally saving lives!!

3 months ago I learned that the lower back pain I've been having was due to a Chordoma tumor growing in my lumbar spine. Part of the emotional trauma of this diagnosis was hearing how rare this type of cancer is. My expectation was that there would be very little work going on to develop treatments and cures for Chordoma. It has been a tremendous surprise to discover the Chordoma Foundation, both in terms of the wealth of information I've been provided as well as the promising research that is under way in large part due to the efforts of this foundation. It has given me confidence that my treatment plan is optimal and hope that there will be even better options available in the future.

The chordom foundation was our go to resource when my husband was first diagnosed in 2014. The staff is excellent and great source of information.

A family member was diagnosed with a Chordoma recently and we were struggling to find resources to understand that this meant and what we could do to support our loved one. The Chordoma Foundation was a godsend for our family. From informative conferences, community connections, and fundraising teams (Brooklyn Half!) they were indispensable. I am so impressed with their sense of community and professionalism.

I've been diagnosed with sacral chordoma in august. My doctor got me in contact with CF The Netherlands. Soon i took part in the facebook-group of Chordoma Survivors. In the early days after diagnosis, CF provided me with a lot of really very essential information. It helped me to make the right choices considering treatment. CF provides me with a whole support system: it gives me medical and practical information, but also gives me emotional support! It would have been a great difference if I had to go through this alone!!!

In the last six months I was diagnosed with clivial chordoma and underwent surgery to remove the tumor which had entered the dura of my brain, was pressing on the optic nerves, and had started to intrude on my brain stem. The Chordoma Foundation has provided me with professional and peer support, helping me learn about this extremely rare form of cancer and what to expect before and after surgery. The daily updates help one to learn from others and that we are not alone in our individual struggles in surviving this nasty disease. The Navigators are always responsive to the individual needs for each person who requests assistance. The Community of patients and caregivers provides a forum where we can connect with others, unload concerns, and share information. Chordoma impacts one in a million people. It changes one's life. The Chordoma Foundation actively supports research in finding a cure and better treatment options for this rare and destructive form of cancer. Thank you.

Our son Aaron was 11 years old when he was diagnosed with a clival chordoma in Nov. 1997. At that time very little was known about this rare disease. Throughout our 7 year journey we only knew of one other person in the USA with this disease so this one family in Texas (we lived in NC) comprised our "chordoma community". After multiple surgeries across the US, proton beam radiation at Loma Linda (which was the only facility in the US offering PB), and a gallant fight, Aaron succumbed to this persistent tumor in Aug. 2004. He had just graduated from high school with highest honors in May, 2004. When we learned about the formation of the Chordoma Foundation in 2007, we knew this was something in which we had to be involved. We attended the very first Chordoma Community Conference in Bethesda, MD in March, 2008. From the start we realized what a unique and highly driven group of people were involved in this Foundation. We immediately felt a strong bond with the group even though we were the only people there who had lost a loved one. Unfortunately, there were a number of people there whose involvement continued like ours. . . The Chordoma Foundation has made exponential progress in the past 10 years. If I were a newly diagnosed chordoma patient I would be quite optimistic about my outcome. This is a patient driven Foundation with strongest of ties to their research and medical community. I'm not sure there is any other community with this high level of interaction and communication. The CF deserves every recognition available not only for their excellence and success but for their personal interaction with patient/family/caregiver population. Karen Sain

Try to imagine a 18 year old boy, his world turned upside down by a rare cancer diagnosis, deciding it is time to beat that disease. Supported by a network of dedicated people, stepping into a lab, getting the most dedicated doctors from around the world to join him in finding a cure and improve the lives of patients. I mean, is there any better way to start a patient organisation? I am a proud volunteer, this is an amazing organisation.

The Chordoma Foundation has been an absolute blessing over the past few months. They have been there 100% with support, information, advice and cheering us on. I'm not sure if we would have been able to navigate the chordoma world without them. Thanks to their advice and resources, we go second opinions, found experts and made a plan with some really good doctors. Thanks to them, my husband isnt looking at a death sentence. I am forever grateful for this amazing foundation.

The Chordoma Foundation information saved my life. I was misdiagnosed with a pilonidal cyst in July 2017. My local surgeon, not realizing what it was, lanced my 'cyst' twice, then tried removing it with an ordinary open surgery. Thankfully he had enough sense to stop and biopsy the mass. His la di dah attitude was even further apparent when he casually tossed a sheet of paper with information from Google at me in response to my question about the biopsy results.

Thank God the Chordoma Foundation was the top entry on that sheet. As my wife began researching the information the Chordoma Foundation had available, only then did we realize how serious the situation was.

The Chordoma Foundation's expert doctor lists helped me get treatment opinions and options from doctors all over the US, ultimately landing me in Boston for care.

Their patient connections helped me contact and communicate with others around the country who encountered this rare form of cancer. That support has been invaluable.

The research efforts spearheaded by the Chordoma Foundation have already found treatment options that didn't exist 10 years ago and new strategies are being developed every day that will help doctor's cure chordoma and that will help treat other types of cancer.

Chordoma Foundation is a very, very friendly, helpful and professional organisation. The way the organisation works to move research forward is truly impressive and as a mother of a girl with clival chordoma it gives me hope.

I was diagnosed with sacral chordoma in January 2016. With the help of the chordoma foundation, I found an experienced doctor at MD Anderson in Houston, TX. Thanks CF.

When I was diagnosed 2 years ago with a Clival Chordoma I was scared and felt alone. The foundation has brought me hope and a sense of family. They have been there to help me through all my chordoma questions and struggles. Having the foundation has made my cancer diagnosis a little more bearable and liveable.

Chordoma foundation was Very important to me And to my husband that had to take a hard decision on June 2016. Before having his surgery to take of his sacral Chordoma we all necessary support and orientations from Chordoma foundation. Today my husband is living with no sequels. Thank you CF.

Chordoma is an extremely rare cancer that can affect people at any age. But because it's so rare, it can be very difficult to get a correct diagnosis and even more difficult to access appropriate treatment. At present there is no cure and treatment options have been limited. This is where the Foundation comes in. As the parent of a young chordoma patient, I depend on the Foundation for vital information. And because I want my daughter to have a long life, I depend on the Foundation to spearhead research. For a small organization, they have an incredible record of bringing together researchers and physicians from around the world to uncover the mechanisms of the disease, learn what treatment works, and strive for a cure. Additionally, the Foundation provides a range of support services for all those affected by chordoma.

My husband was diagnosed in 2012...We found the group , and the foundation, and the members are so active and supportive, and all actions by the foundation priceless, as they are the only voice to help raise awareness for this Uncommon cancer , one in a million...and they move mountains, and throughout my husband journey, both the foundation and the group were there. Present to help and support the medical and research world, getting more funds, and also there for patients and also their family as no one is prepared to cope with such aggressive and also unknown cancer. My husband passed away, in Paris, July 2015, and I am still part of the group and attended a conference in Milan, for him.the work of Josh Sommers, and all around him, who created the Chordoma Foundation with doctors and patients is remarkable.

Smart people. Funds go to cutting edge research & clinical trials. Patients are guided by people who have been through it. Community conferences share information and staff is approachable & supportive. Excellent nonprofit organization.