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Mashup Score: 2Honoring Steven Matthews This Rare Cancer Day - NORD (National Organization for Rare Disorders) - 2 year(s) ago
September 30 is #RareCancerDay, an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. NORD is highlighting the stories of Read more >
Categories: Latest Headlines, Rare DiseaseTweet
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Mashup Score: 0
Ten years ago, 18-year-old Tom Bowdidge was diagnosed with desmoplastic small round cell tumour (DSRCT) – an aggressive type of sarcoma. DSRCT has a very poor prognosis and Tom died in 2013 after several months of “brutal” treatment. The ICR is working in partnership with the foundation set up in his name to find more effective and kinder treatments.
Source: www.icr.ac.ukCategories: Hem/Onc News and Journals, Latest HeadlinesTweet-
On #RareCancerDay find out how ICR scientists are honouring the legacy of young people who died after being diagnosed with #DSRCT, an aggressive type of #Sarcoma: https://t.co/3pj92u6ijR #RareCancer #ChildhoodCancerAwarenessMonth #CCAM https://t.co/XP9bvcg9xd
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Mashup Score: 2Unanswered Questions: Leah’s Rare Cancer Story - NORD (National Organization for Rare Disorders) - 2 year(s) ago
My life has been completely altered by rare diseases, specifically rare cancer. During my pregnancy with my 2nd child, I had stage IV sarcoma. Doctors were unable to tell me the effect it had on my baby or how long I had to live. I had so many unanswered questions. Side effects from the treatment Read more >
Categories: Latest Headlines, Rare DiseaseTweet-
"I’m still here and not letting #RareCancer rob me of my happiness." In honor of #RareCancerDay coming up on September 30, NORD is sharing Leah's journey with stage IV #sarcoma and the way she advocates for herself. Read more here: https://t.co/9Ienbl8Uxs https://t.co/mkGXP44v85
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Mashup Score: 7
Rare Cancer Day is an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. Spearheaded by the NORD Rare Cancer Coalition®, which is composed of 27 rare cancer-specific member organizations, Rare Cancer Day is observed on September 30 to highlight the challenges patients face and to unify individuals living with rare cancers for awareness and…
Categories: Latest Headlines, Rare DiseaseTweet-
Did you know that all #PediatricCancer is #RareCancer? You may be rare, but you’re not alone! Learn how you can get involved to raise awareness on September 30 for #RareCancerDay: https://t.co/5M4Z4kuUUU https://t.co/6HVrJGuVoI
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Mashup Score: 6New Legislation Introduced to Address Rare Cancers - 3 year(s) ago
Act would mandate coverage for molecular diagnostics, genetic counseling for patients on Medicare, Medicaid and CHIP
Source: Moffitt Cancer CenterCategories: Hem/Onc News and Journals, Latest HeadlinesTweet-
Did you know 1 in 3 new cancer patients are diagnosed with what is considered a rare cancer? Today, on rare cancer day, new federal legislation is being introduced to help these patients. #RareCancerDay https://t.co/Y4hAKgxwfv
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Did you know 1 in 3 new cancer patients are diagnosed with what is considered a rare cancer? Today, on rare cancer day, new federal legislation is being introduced to help these patients. #RareCancerDay https://t.co/Y4hAKgfUQV
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Mashup Score: 18Timing and Access: Katherine’s Rare Cancer Story - NORD (National Organization for Rare Disorders) - 3 year(s) ago
I was a healthy 27-year-old with no underlying risk factors when I was diagnosed with appendix cancer. One evening, I started cramping in my abdomen. I thought nothing of it until the intensity increased and I could barely sit upright or walk. I called my primary care provider and she recommended I go to the emergency room, as it could be appendicitis. I was nervous Read more >
Categories: Latest Headlines, Rare DiseaseTweet-
“Going through a cancer diagnosis & treatment myself made me aware of just how different each patient's experience is.” Katherine shares the story of her unexpected #AppendixCancer diagnosis in honor of #RareCancerDay today: https://t.co/aBweAwWaDm https://t.co/dkgoj6rYlD
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"I was a healthy 27-year-old with no underlying risk factors when I was diagnosed with #AppendixCancer." Read Katherine's story on the NORD blog: https://t.co/aBweAwWaDm September 30 is #RareCancerDay, an annual awareness day devoted to shining a light on #RareCancers. https://t.co/tuSNug6Cnu
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Mashup Score: 10Rare Cancer Day 2021: Bryce’s Clear Cell Sarcoma Story - NORD (National Organization for Rare Disorders) - 3 year(s) ago
Bryce was able to get diagnosed with clear cell sarcoma (CCS) quickly. He tries not to think about it but finds it virtually impossible because he knows that there is no cure. Originally, his primary care physician thought the mass could be a desmoid tumor but once the CT scan and MRI came back as inconclusive, she recommended for it to be biopsied immediately.
Categories: Latest Headlines, Rare DiseaseTweet-
Its #RareCancerDay! NORD and the NORD #RareCancerCoalition are bringing awareness to #RareCancer patients and their stories. One of those stories being Bryce’s #ClearCellSarcoma story! Read about Bryce & his journey on the NORD blog: https://t.co/NPmSFlJLOj https://t.co/pplqk0y5i2
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Mashup Score: 8Loneliness, Connection and Mesothelioma: Tamron’s Rare Disease Story - NORD (National Organization for Rare Disorders) - 3 year(s) ago
I was diagnosed with peritoneal mesothelioma in 2007 as a 21-year-old new mother. When the doctor told me I had peritoneal mesothelioma, I didn’t know what it was. I was overwhelmed with shock and confusion with so many questions about this rare disease and how little information seemed available. Mostly, I felt alone. Feeling alone when faced with a diagnosis of Read more >
Categories: Latest Headlines, Rare DiseaseTweet-
"If a rare disease isn’t publicized enough, how will patients and families know which direction to take?" Tamron, a peritoneal #mesothelioma patient, shares her story and how important it is to be aware of #RareCancers on #RareCancerDay: https://t.co/UFJFRbW6kX https://t.co/qggAL4U2jQ
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Mashup Score: 2Rare Skin Cancers - The Skin Cancer Foundation - 3 year(s) ago
Rare skin cancers are important to know about because they may be mistaken for other conditions, delaying their diagnosis and treatment.
Source: The Skin Cancer FoundationCategories: Hem/Onc News and Journals, Latest HeadlinesTweet-
While basal cell carcinoma, squamous cell carcinoma and melanoma are more widespread, these rare skin cancers are important to know about. #RareCancerDay https://t.co/2bgmgM1CII
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Mashup Score: 7Treating Rare Cancers Can Be Hard: Why Genomic Testing Is Crucial - CONQUER: the patient voice - 3 year(s) ago
Jim Palma and John Hopper, Co-Chairs of NORD Rare Cancer Coalition, explain the difference between genetic testing and genomic profile testing, and why all patients with rare cancers should have a genomic profile done to select the best treatment for them based on potential genomic alteration.
Source: CONQUER: the patient voiceCategories: Latest Headlines, Rare DiseaseTweet-
Today is #RareCancerDay! Check out this @conquermagazine article ft. Jim Palma (@targetcancer) & John Hopper (@fibrofoundation), co-chairs of NORD #RareCancerCoalition as they explain why all patients w/ #RareCancers should have a genomic profile done: https://t.co/aCy0eS47HU
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Today is #RareCancerDay! In honor of this important day, we are sharing Steven's story, who served in the #AirForce and as a #firefighter before his #chondrosarcoma diagnosis. Join us and @CS_Foundation1 in honoring him and his family. https://t.co/cLJMV9xKVY https://t.co/OzPtQzC2kN