If you or your loved one has been diagnosed with sarcoma, you may be overwhelmed with the lack of information available about this form of cancer. You may also be wondering how you will ever learn everything you need to decide the best care.
We work with leading healthcare, wellness, legal and financial professionals to provide you with trusted information regarding your medical, emotional, practical and lifestyle concerns. Every sarcoma like every person is different. We hope our educational programs guide you with your healthcare team and allow you to make informed decisions about the treatment plan that is right for you.
Our Sarcoma 360 series will help answer your questions about sarcoma, whether you are newly diagnosed, in treatment or years beyond treatment.
Each month, we ask a cancer expert from our community to respond to your questions on a specific topic during an ask-the-expert residency. Answers to select questions will be posted on our website on an ongoing basis throughout the month.
What is a Tweet Chat?
A Tweet Chat, also known as a Twitter Chat, is a group conversation on Twitter around a certain hashtag (#), during a preset time, led by one moderating account. Anyone can participate in a Tweet Chat by answering questions from the moderator, talking with other participants, re-tweeting messages you like or simply following along. EDDF’s Tweet chats leverage the social media platform to bring together sarcoma patients, caregivers, advocates and experts to discuss the issues important to our community.
How do I join a Tweet Chat?
You can simply use Twitter for the chat. Enter #AskEDDF in the search bar on the upper right, then choose “all” under “Results.” You can then reply to tweets in the feed or compose a new tweet using the tweet button in the upper right hand corner. Be sure to include the hashtag so your tweets will stay in the stream.
If you are new to Tweet Chats, you may want to simply observe our program. However, we encourage you to participate and engage in our chat and with our panelists. There are also several free Twitter Chat applications that allow you to view and participate.
Here are some tips for participating:
- Follow EDDF on Twitter (@EDDFoundation).
- Log onto Twitter during the posted chat time.
- Use the designated hashtag (#AskEDDF) to join others in the chat.
- Keep your tweets brief and use abbreviations where appropriate. Twitter has a 140-character limit.
- Try to keep your tweets and retweets (RT) to a minimum during the first 30 minutes. This will make it easier for audience members to follow the chat with our experts.
- We will have an audience Q&A. When you have a question, send it out as you would a normal tweet with the addition of the specified hashtag. For example: “What are the latest treatments for sarcoma? #AskEDDF”
- If you get confused or lose your place in the Tweet Chat, go to the#AskEDDF Tweet Chat Room. This may make it easier to follow the thread.
Check our social media pages as well as this Website often. We will post a schedule for our 2016 Twitter Chats throughout the year.
This program will give education and support to those families with a parental cancer diagnosis, enabling them to go on the offensive against this life-threatening disease. Resources available through the program include age-appropriate information for children and teens, Christian-based family counseling, and Fast Breakaway retreats that allow families to visit with others in similar situations as well as the opportunity to simply escape from the daily stress that a cancer diagnosis can bring.
Available in print and online, our sarcoma kits provide resources and information to assist newly diagnosed sarcoma patients on their journey.
Caregivers News Feed
The EDDF Caregivers News Feed is a collaborative effort dedicated to caregivers. No matter what the disease or illness, caregivers play a fundamental role in providing physical and emotional support. Content includes tips, supportive quotes and quality articles to address the issues and concerns relevant to caregivers.
Sarcoma Awareness Month
Our goal throughout the month of July is to educate others about sarcoma cancer (often referred to as the “forgotten cancer”), provide information for those newly diagnosed or living with sarcoma and spread awareness about this often misdiagnosed disease. Take the pledge and learn more on our Sarcoma Awareness site.
Rare Disease Awareness
Rare Disease Day is celebrated annually on the last day of February to bring widespread recognition of rare diseases as a global health challenge, highlight the importance of research and treatment, and spotlight the impact on the lives of those living with these diseases. EDDF is proud to support the sarcoma community by participating in Rare Disease Day. Visit our Rare Care Community to learn more about rare cancers.