Why Psychosocial Oncology Can’t Be Overlooked
When you’re first diagnosed with something like breast cancer, ovarian cancer or another rare condition there’s a million things racing through your mind and a million and one things to…
Genetic Counseling Can Change Lives
"Five to 10 percent of all cancer is hereditary" - Adelsperger Genetic counselors can help you understand not only your own risk for developing cancer but the risk of your…
Positive Phase 2 Clinical Trial Results for PML!
What is PML? PML stands for progressive multifocal leukoencephalopathy. It’s a brain infection caused by the JC virus. The JC virus itself isn’t all that rare. In fact, its pretty…
Astrophysics Could Improve Treatment for Cystic Fibrosis?
In order to improve the lives of patients for any illness, we all know research is an essential step. We also know that the most accurate research is derived from…
New Study Could Improve Microcephaly Research
A recent study conducted by PLOS Biology has revealed the importance of Active-DHA in the brain, particularly as it is still developing. This could mean big things in terms of…
Shaving Heads, Raising Money, Beating Cancer
Lisa Clayton has been diagnosed with cancer as many times as she's given birth. She's a mom of 5, and she has just heard the news "you have cancer" for…
New Drug Could Be The Penicillin of Cancer?
LiPlaCis is a formulation of cisplatin that delivers its agent directly to cancerous tumor sites. Its efficacy has so far only been studied within breast cancer patients. However, scientists have reason to…
Faith, Friendship, and a 5K for 5P
A diagnosis of Cri du Chat (or 5P-), used to mean institutionalization. The name is french meaning "cry of a cat" which comes from the distinct sound children with the illness…
Humans May be Able to Smell Cancer- A New Way to Diagnose?
How it all started Joy Milne is a retired nurse who helped diagnose her husband with Parkinson's disease. 12 years before the official diagnosis, Joy noticed a change in her…
Representation in Clinical Trials- It’s a Problem
A past, current, and future problem – underrepresentation in clinical trials, particularly for rare diseases. Why does representation matter? Besides, you know, the basics of equality, drugs can react differently…
80% of People at Risk for Cancer Don’t Know it- Do You?
A new study has found that 80 percent of people who have an identifiable genetic risk for cancer due to a mutated BRCA1/2 gene don’t know they're at risk. The…
Powerlifter to Compete again in World Championships Despite Rare Diagnosis
Joe Marksteiner, a 22-year Air Force veteran and former gymnast, won a title at the 2013 World Powerlifting Championships at the age of 60. This year, now at 65, he…
Bogus Cancer Treatments on eBay – Don’t Let Them Fool You
Just Searching for Answers When diagnosed with a rare disease, cancer, or other illness, it makes sense that you’d research every type of treatment on the market. However, there are…
Moving to Italy Could Save This Boy’s Life
Meet Ethan Ethan Faneran-Burley was diagnosed at two years old with Mucopolysaccharidosis type 6 (or MPS type 6). It's a progressive, degenerative, and ultimately fatal condition. Those with MPS type…
This Dad Climbed a Literal Mountain for His Daughter with Pompe Disease
The Malaysia Lysosomal Diseases Association (MLDA) was formed in 2011 by the hands of eight families. Their goal was to raise awareness and funds for those diagnosed with lysosomal storage…
It’s Time to Take Control of Your Own Healthcare
Misdiagnosis after Misdiagnosis Ever try to google your symptoms to figure out what’s wrong with you? I think we all have at some point. Is it a cold? A virus?…
Chronic Conditions in a Constantly Changing World
Who Lives With a Chronic Illness? A Lot of People. More than half of the world’s population lives with a chronic condition and of the 2 trillion the US spends…
Inclusive Karate in Canada!
As a teacher, It’s not unique to have a kid with a disability in your class. But sometimes it’s hard to know how to adjust your curriculum in order to…
Experiencing Physical and Emotional Displacement with Lyme Disease
Too often we try to interpret the experiences of others without actually communicating with the very individuals we’re trying to better understand. This leads to false impressions and frequently creates…
How Ovarian Cancer Snuck Up on This Mom
Dr Ronny Drapkin, a professor at the University of Pennsylvania says, “One of the things I tell women is that nobody knows your body as well as you do. If…
Hemophilia Doesn’t Just Affect Men, Let’s Stop Talking like It Does
Hemophilia can affect anyone. Let’s make a few things clear: Women are carriers of hemophilia and pass the gene, but men determine the child’s gender. It’s not all on you,…
Tips for a New Hemophilia Patient and New Caregiver: Reporting from the WFH Congress
To the patient: Accepting your diagnosis doesn’t mean you can’t be mad about it. It simply means you understand that the reality of your life has changed and you know…
A Letter to Parents on Transitioning from Pediatric to Adult Care in Hemophilia: Reporting from the WFH Congress
Dear Parents, You need to understand that you are taking on a completely new role in your child’s life. You will no longer be controlling their hemophilia for them. It’s…
Non-Adherence and Hemophilia: Reporting from the WFH Congress
Why is non-adherence still a problem for many hemophilia patients? There’s a very simple answer here: it’s because hemophilia can be difficult to manage and hard to live with. There’s…
10 Fundraising Tips for Your Foundation: Reporting from the WFH Congress
1. Start planning your fundraiser early. Logistics take time. 2. Know your audience. There are a million good causes in the world to donate to. You have to know who…
