Rare Disease Day is February 28, 2011. This is our day to grab the spotlight and focus the world’s attention on rare diseases, specifically, our disease: Congenital Hyperinsulinism (HI). We have 45 days to plan our strategy so we can make the most of this day.
I had the pleasure of visiting the National Organization of Rare Disorders (NORD) earlier this week. NORD is a fantastic umbrella organization for rare disorders. The folks at NORD are passionate about making life better for people with rare diseases and they are the U.S. organizers of Rare Disease Day. CHI and many other patient organizations have joined with them to make this February 28th a day to be remembered.
In honor of the day, CHI is launching the Care about Rare Campaign and we want all of you to join us in this endeavor. Folks might ask, why Care about Rare? Why care about a disease that affects so few people? Well, the answer is obvious. Each and every life is precious and needs to be lived to the fullest. Those born with a rare disease need answers and cures just like those of us who suffer from common ailments. “Sorry, there aren’t funds to develop treatments for that rare disorder” should never be heard.
We live in a society that prizes many things rare: rare beauty, rare talent, rare intelligence, rare jewels, even rare truffles. So why not rare diseases?
Please take a moment to think about what you can do to raise awareness about HI and rare diseases in honor of this day? Look at the list below or write or call me to brainstorm about how you can be a part of this. I can be reached at jraskin@congenitalhi.org or 973-544-8372
- Hold a Care About Rare Event on February 28th in honor of the day. It can be a fundraising or raising awareness event. Call or email me for help in planning your event.
- Share your stories with us. CHI will publish them on our blog under the heading HI-Stories. Don’t worry about length. Just a paragraph or two is fine or more also works. Send us a high-resolution picture to go along with your story, if you like.
- CHI has already become a Rare Disease Day partner and is representing all of your interests. As individuals, you can also become a Rare Disease Day Ambassador. You can go to the NORD website to do so (rarediseases.org).
- Make a 30-90 second video about your experience with HI. Send it to the rarediseaseday.us website for inclusion in their video library. We’ll also put it up on the CHI website.
- The new Congress has just convened. Don’t waste a second. Contact your representative and request that he/she join the Rare and Neglected Diseases Congressional Caucus. You can check the NORD website to see if your representative is already on it (very few are). The Caucus helps focus attention on rare diseases.
Together we can make the world Care about Rare!
[:es]Rare Disease Day is February 28, 2011. This is our day to grab the spotlight and focus the world’s attention on rare diseases, specifically, our disease: Congenital Hyperinsulinism (HI). We have 45 days to plan our strategy so we can make the most of this day.
I had the pleasure of visiting the National Organization of Rare Disorders (NORD) earlier this week. NORD is a fantastic umbrella organization for rare disorders. The folks at NORD are passionate about making life better for people with rare diseases and they are the U.S. organizers of Rare Disease Day. CHI and many other patient organizations have joined with them to make this February 28th a day to be remembered.
In honor of the day, CHI is launching the Care about Rare Campaign and we want all of you to join us in this endeavor. Folks might ask, why Care about Rare? Why care about a disease that affects so few people? Well, the answer is obvious. Each and every life is precious and needs to be lived to the fullest. Those born with a rare disease need answers and cures just like those of us who suffer from common ailments. “Sorry, there aren’t funds to develop treatments for that rare disorder” should never be heard.
We live in a society that prizes many things rare: rare beauty, rare talent, rare intelligence, rare jewels, even rare truffles. So why not rare diseases?
Please take a moment to think about what you can do to raise awareness about HI and rare diseases in honor of this day? Look at the list below or write or call me to brainstorm about how you can be a part of this. I can be reached at jraskin@congenitalhi.org or 973-544-8372
- Hold a Care About Rare Event on February 28th in honor of the day. It can be a fundraising or raising awareness event. Call or email me for help in planning your event.
- Share your stories with us. CHI will publish them on our blog under the heading HIstories. Don’t worry about length. Just a paragraph or two is fine or more also works. Send us a high-resolution picture to go along with your story, if you like.
- CHI has already become a Rare Disease Day partner and is representing all of your interests. As individuals, you can also become a Rare Disease Day Ambassador. You can go to the NORD website to do so (rarediseases.org).
- Make a 30-90 second video about your experience with HI. Send it to the rarediseaseday.us website for inclusion in their video library. We’ll also put it up on the CHI website.
- The new Congress has just convened. Don’t waste a second. Contact your representative and request that he/she join the Rare and Neglected Diseases Congressional Caucus. You can check the NORD website to see if your representative is already on it (very few are). The Caucus helps focus attention on rare diseases.
Together we can make the world Care about Rare!
