Rare Disease Day 2024

 

 

February 29th is Rare Disease Day®.

Rare Disease Day is an annual awareness day dedicated to raising the understanding of rare diseases and calling attention to the special challenges faced by patients and the community. Worldwide 300 million people are living with rare diseases.  To learn more about rare diseases and to read stories of those living with rare diseases visit the Rare Disease Day website at https://www.rarediseaseday.org/ .

These gynecologic cancers,

Ovarian cancer
Ovarian carcinosarcoma
Ovarian epithelial cancer
Ovarian germ cell tumor
Ovarian low malignant potential tumor
Ovarian small cell carcinoma

Uterine Carcinosarcoma
Uterine sarcoma
Vaginal cancer

Vulvar cancer

Fallopian tube cancer

Gynandroblastoma

Endometrial stromal sarcoma

Gestational trophoblastic tumor 

Leiomyosarcoma 

are considered RARE by NIH's Genetic and Rare Diseases Information Center. 

In the US, diseases that affect less than 200,000 people are considered rare.In the EU a disease is rare if it affects no more than 50 per 100,000 people.  In 2023, roughly 19,710 women in the US were be diagnosed with Ovarian cancer. Ovarian Cancer is a rare disease!

Why is Rare Disease Day important? 

Research funding to develop screening tests or treatments in rare diseases may be more limited than more common diseases. Due to the limited number of people with the rare diseases accruing to clinical trials is difficult. Trial designs are being modified to better understand rare diseases. As a person with a rare disease, especially people of color and indigenous people, it may be more difficult to find treatment centers and emotional support at diagnosis.Raising awareness through this day is important in the US and globally.

You may find additional information about Rare Disease Day on the  NORD - National Organization for Rare Disorders, Inc website . 

Do you have a rare disease? What would you like others to know about your disease? 

Dee

Every Day is a Blessing!

 

 

Rare Disease Day 2022

February 28th is Rare Disease Day®. 

Ovarian Cancer is a Rare Disease!

Rare Disease Day is an annual awareness day dedicated to raising the understanding of rare diseases and calling attention to the special challenges faced by patients and the community. 

These gynecologic cancers,

Ovarian cancer
Ovarian carcinosarcoma
Ovarian epithelial cancer
Ovarian germ cell tumor
Ovarian low malignant potential tumor
Ovarian small cell carcinoma

Uterine Carcinosarcoma
Uterine sarcoma
Vaginal cancer

Vulvar cancer

Fallopian tube cancer

Gynandroblastoma

Endometrial stromal sarcoma

Gestational trophoblastic tumor 

Leiomyosarcoma 

are considered RARE by NIH's Genetic and Rare Diseases Information Center. In the US, diseases that affect less than 200,000 people are considered rare. In 2022, roughly 19,880 women in the US will be diagnosed with Ovarian cancer. 

Why is this Day important? 

Research funding to develop screening tests or treatments in rare diseases may be more limited than more common diseases. Due to the limited number of people with the rare diseases accruing to clinical trials is difficult. Trial designs need to be changed so these trials can take place. As a person with a rare disease, especially people of color and indigenous people, it may be more difficult to find emotional support. This is where online communities are helpful. 

You may find additional information about Rare Disease Day on the  NORD - National Organization for Rare Disorders, Inc website . 

Do you have a rare disease? What would you like others to know about your disease? 

Dee

Every Day is a Blessing!

 

 

 

 

Speaking Out About NIH Budget Cuts

I was invited by Rutgers Cancer Institute of New Jersey to speak at the press conference Senator Bob Menendez  was holding after he toured the Cancer Center.  The press conference highlighted the impact cutting the National Institutes of Health budget by 18% would have on researchers, oncologists and patients.

Here are the main points I made during the speech.

I am here today because of cancer research funded by the National Institutes of Health. The successful treatment of my cancer at the Rutgers Cancer Institute of New Jersey has been key to my survival. I was first diagnosed with stage three ovarian cancer in 2005, one of over 700 women diagnosed that year in NJ. After my surgery, I took part in a clinical research trial and after nine chemotherapy cycles, I was told I was disease free. When the tumor returned in 2008 I had surgery, 6 more rounds of chemotherapy and was once again disease free. The treatments I underwent were available to me because of research supported by the NIH.

In the almost 12 years since my diagnosis I have seen major developments in treating cancers like mine – all due to research funded by the federal government.

In 2006, a study was released that said intra peritoneal chemotherapy offered a survival benefit for women with ovarian cancer. We know this because of NIH funded research.

  

In 2011, the Cancer Genome Atlas, a project funded by the NIH, identified new mutations linked to ovarian cancer. This knowledge has led to new treatment strategies. We know this because of NIH funded research.

We saw the FDA approve a number of new therapies that specifically target ovarian cancer, reducing toxicity and maximizing anti-cancer efficacy.

We have these treatments because of NIH funded research.

Today work continues to develop immunotherapies to treat ovarian cancer.

We have these new developments because of NIH funded research. 

Progress is being made and now is not the time to reduce NIH funding.

A proposed 18% reduction in funding would stagnate key research and reduce the number of investigators trying to understand the causes of the disease and developing cures for many types of cancer. This in turn will impact the lives of many residents in NJ who have been or will be diagnosed with the disease in the future. 

As a Board member of the local Kaleidoscope of Hope Ovarian Cancer Foundation I have seen the impact grants can make in the career development of young cancer investigators. Many researchers supported by KOH have gone on to receive grant awards from the NIH. The Federal government’s support of cancer researchers, especially young investigators who wish to study rare cancers, is very important to me and other women who may develop gynecologic cancers in the future.

Cancer is not partisan, it does not care what religion you are, what the color of your skin is, what your age or sexual preference is. The only way we as a country will learn how to reduce our risk for disease, find better treatments, find a cure and  support survivors is through cancer research funded by the National Institutes of Health.  Thank you.

 Press Release: https://www.menendez.senate.gov/news-and-events/press/menendez-visits-rutgers-cancer-institute-of-nj-to-illustrate-the-impact-of-trump-proposed-budget-cuts-on-lifesaving-biomedical-research-that-leads-to-new-cures-treatments

 Dee

Every Day is a Blessing! 

Coming Full Circle with LiveSTRONG and The Cancer Survivorship Research Conference

As many of you know, in 2006 I attended the first LiveSTRONG Survivors Summit. Attending that meeting is what launched my work as a cancer advocate and allowed me to network with a number of other survivors who I continue to be friends with.

This past week once again the LiveSTRONG Foundation played a role in my continued advocacy work. They chose me to receive one of twenty scholarships to attend the Biennial Cancer Survivorship Research Conference: Advancing Survivorship Through Multilevel Collaboration in Atlanta, Georgia. The Conference is co-sponsored by the Center for Disease Control and Prevention, the National Cancer Institute,  the LiveSTRONG Foundation, the Department of Health and Human Services and the American Cancer Society. I am so thankful to the Conference planning committee for including survivors and advocates as conference participants and to LiveSTRONG for providing the informative Survivor Advocate program  and supporting my attendance at this amazing opportunity.

While at the Conference I tweeted in real time using the hashtag #CASurvConf. Below is a sampling  of my posts. You can see even more tweets about the conference if you search on Twitter for the conference hashtag.

Informative session re: big data. Good to see PRO being included. #CASurvConf
— Women of Teal (@womenofteal) June 20, 2014

PRO- Patient reported outcomes

Ganz: survivorship is a chronic disease and we need to use that to move things in Congress etc. #CASurvConf
— Women of Teal (@womenofteal) June 20, 2014

Orby: need to understand cancer characteristics and co morbidity in selfmanagement #CASurvConf
— Women of Teal (@womenofteal) June 19, 2014

Salner: one survivorship visit is not enough . Need to find way to fund continuous monitoring #CASurvConf
— Women of Teal (@womenofteal) June 19, 2014

Mohile: Geriatric assessment can ID patients at risk for increased toxicity. Chemo leads to neuropathy leads 2 falls in older #CASurvConf
— Women of Teal (@womenofteal) June 18, 2014

Goodman : guidelines need to include co-morbidity #CASurvConf
— Women of Teal (@womenofteal) June 18, 2014

Yes we do “@sfuldnasso: Ellen Stovall: "We need a well-funded cancer survivorship program in this country. There's no excuse." #CASurvConf”
— Women of Teal (@womenofteal) June 18, 2014

Although I will not be reporting on every session I attended during the 3 day conference, I will share some insights into the research and topics I found most interesting.  I will cover these topics :

Social Ecologic Methods related to cancer Survivorship - Part 1
Session Highlights -Part 2
Survivorship Guidelines- Part 3
Ovarian Cancer Studies- Part 4
Interesting Interactions - Part 5

Be sure to check back for more information.

Dee
Every Day is a Blessing!

It Really is about Research Dollars

Over the holiday weekend there were many posts on facebook about Ovarian Cancer Awareness Month. I myself posted about hanging ribbons with the Lopez family in Edison. I have been hanging ribbons with them for over 5 years.

Then a friend posted her status. Let me paraphrase what she wrote.

I hope everyone out there hanging ribbons to raise awareness will work hard to lobby their Congressman to support cancer research funding. 

I agree with her 100%. It is wonderful to make women aware of the disease and its symptoms. This way women will get diagnosed at earlier stages. But we also need, dare I say even more than awareness,  the research to better understand the disease,  to develop a screening test for the general public and to better treat the disease. 

We need more federal dollars for research and more private research dollars. 

Lets look at the estimated FY 2013 NIH funding for 3 gynecologic cancers and HPV vaccine research provided by the NIH at

http://report.nih.gov/categorical_spending.aspx

Cervical Cancer - $113 million

Ovarian Cancer - $148 million

Uterine Cancer -  $  42 million 

HPV/ cervical vacccine - $ 26 million

Together they do not equal the $800 million for breast cancer research. Actually most other cancers get more federal research dollars. Only Pancreatic and Liver cancer get lower funding than the gynecologic cancers. 

There is also an Ovarian Cancer Research Program(OCRP)  as part of the Department of Defense (http://cdmrp.army.mil/ocrp/ ) . The DOD OCRP program has a $20 million budget for 2013. 

So when the time comes for research budget discussions please spend the time to e-mail or call your congressman to ask to increase the funding for ovarian cancer research. Or if a local ovarian cancer organization raises funds for research through walks or auctions or other events - make a donation.  

Ribbons matter but funding for research is the key to save women's lives. 

Dee

Every Day is a Blessing!

Calling all Health Bloggers- Media in Medicine Course

 

The Medicine in the Media course offered by the NIH's Office of Disease Prevention teaches evidence-based health reporting. 

This year’s course, to be held October 14–17, 2012, at the Bolger Center in Potomac, Maryland, is open to bloggers, reporters, and editors who provide the general public with news stories about health and healthcare via print, broadcast, or online media. While participants should be eager to enhance their skills in medical science reporting, they need not have extensive experience or a background in medical journalism. The course  teaches attendees to:

•                    Interpret and evaluate research findings, including statistics.

•                    Select stories that hold meaningful messages for the public.

•                    Place stories in their appropriate context.

Please note: The deadline to apply is June 1, 2012, at 5 p.m. ET.

For more information, including FAQs and alumni testimonials, visit the Medicine in the Media website:http://prevention.nih.gov/medmediacourse/

This course is FREE and accommodations are provided too! So fellow health bloggers if you can get yourself to DC this will be the place to be in October.

I regret I will be unable to attend since  I know I would enjoy the sessions on evaluating research findings.   Hopefully I'll be able to attend next year. 

Dee

Every Day is a Blessing!