Today is Rare Disease day, and since GIST is a rare disease we felt it important to remind everyone to take action. The Life Raft Group works hard to advocate for & support our members and their loved ones, but we need your help. We need as many voices to help us shout the news from the rooftops as we can get.
For over ten years, the Life Raft Group has actively pursued a cure for GIST Cancer, while helping those living with it through education, support & advocacy until that cure is found. To learn how the Life Raft Group is involved in advocacy, visit our advocacy section.
For those of you not familiar with what Rare Disease Day is, it is an international event that focuses on advocacy to bring widespread recognition of rare diseases as a global health challenge. The goal is to spread the energy throughout the world is to harness the creative energy of the millions of people around the world with rare diseases — and the millions who care about and assist them— to raise awareness and generate action. You can help us achieve this goal by doing any or several of the following things. Mark your calendars for 2014, because Rare Disease Day is celebrated on the last day of February every year.
Below is a list of ways that you can get involved with the LRG Rare Disease Day:
- Join Our Community – Become a member of the Life Raft Group today and take advantage of the many benefits free to GIST Cancer survivors and their loved ones.
- Sign Up For Our Patient Registry – All Patient Registry information comes directly from patients or caregivers. The LRG uses this data to examine questions that are not being answered quickly enough by current trials or may not even be asked at all. We are also able to provide a detailed “GISTory” so that patients can provide their medical team a detailed GIST history in one document.
- Join Our Tissue Bank – Due to the rarity of GIST, one of the most urgent research needs is for tissue samples. Our one-of-a-kind tissue bank is a partnership between researchers and patients. The tissue samples allows multiple researchers to look at tissue paired with de-identified medical histories.
To Learn more about Rare Disease Day be sure to visit – RareDiseaseDay.us for the United States or here for global Rare Disease Day. Let us know how you plan on celebrating Rare Disease Day by leaving a comment below.