There are less than 30 days to World Rare Disease Day on February 29. We kick off our campaign this year as host of a Rare Disease Blog Hop. Over 40 bloggers united to blog today to raise awareness about this important day and on ways that you can get involved.
The statistics around rare disease are astonishing. 1 in 10 Americans is affected by some type of a rare disease. That’s a huge number of people – 30 million in the U.S. according to the NIH (and over 350 million worldwide.) Did you know that there are 7,000 different types of rare diseases? The amount of drug approvals for the entire rare disease community each year is extremely low – potentially only 5 or so drugs a year out of a 21 total drugs the FDA approves. To date, only 5% of rare diseases have a treatment! For 95% of rare diseases, there is not a single approved treatment.
The bloggers who are blogging with us today include patients and parents who are affected by diseases such as Gaucher’s Disease, Hunter Syndrome, Sanfilippo Syndrome, Batten’s Disease, Joubert Syndrome, Mitochondrial Disease, Moebius Syndrome, Cystinuria, CIDP, Epidermolysis Bullosa, Maple Syrup Urine Disease, Citrullinemia, Huntington’s Disease, Marfan Syndrome, Neimann-Pick, Nager Syndrome, Fibromuscular Dysplasia, Kleefstra Syndrome, Lennox-Gastaut Syndrome, Pseudotumor Cerebri and Langerhans Cell Histiocytosis (LCH).
Other families included in the Blog Hop are currently living without any diagnosis and understand the significance that this type of effort represents – unity, community, made up of millions of people connected all around the globe; it is powerful to think about. We also have a special collaboration with blogger “Afternoon Napper” who is simultaneously hosting Grand Rounds (which is a weekly summary of the best healthcare writing online).
Consider for a moment that 75% of rare diseases affect children and that 30% of children with rare disease will die before their 5th birthday. This is a staggering and disturbing fact that few people realize. This fact and others are evidence of the importance of helping build greater awareness about the plight of the rare disease community, the need for more education about the needs of these families and the millions of people impacted by rare disease every day.
Our goal is to unite 1 Million People for Rare Disease as more awareness will lead to more support, research and funding for treatments and cures. Currently only 5% of the 7,000 rare diseases have any treatments and there are absolutely NO cures. We can change that. And with your help, we can help these families and their children much more quickly.
Our Call to Action:
- Join the “1 Million for Rare Disease ” awareness movement by displaying the 1 Million logo on your website or Facebook page. Tweet: #1Mil4RARE
- “Like” the Global Genes Project on Facebook: Facebook.com/GlobalGenesProject. Tweet with us @GlobalGenes.
- Wear Jeans and a Denim Ribbon on Rare Disease Day and consider holding a “jeans party” to raise money for your rare disease. “Wear That You Care” – click here to see photos from last year.
- Get involved with the Rare Project and Global Genes Project and spread the word to your social network.
- Tell friends and family about this awareness campaign by forwarding this blog, re-posting on Facebook, etc. Please pass it on!
We need supporters to join together to demand action and change, to help champion for many of the families that don’t have an opportunity to advocate on their own. We can do this – help spread the word, join the movement, and let’s work to make a real difference for these families and their children that are suffering.
A Person’s Disease May Be RARE But Their Hope Should Not Be.
Thank you for reading and please take a moment to read and share the posts from the bloggers below.