It's coming. Rare Disease Day is February 29, 2012. I love that date as itself is rare! We who have an ILD are members of the Rare Disease Club. Here is a web site about the plans for this world wide event.
http://www.rarediseaseday.org/Sally, the head of my ILD Support Group is scheduled to speak at the Global Rare Disease Day program on that day in Modena, Italy. Modena has the only ILD clinic in Italy and only one of three in Europe. The head of the clinic, Dr. Rinaldi was one of the speakers we met at an ILD Support Group meeting. A brilliant man.
The Pulmonary Fibrosis Foundation is also participating in this day of bringing awareness to rare diseases. Here is their web site
www.pulmonaryfibrosis.org/projectpf
Susan from the ILD Support Group has pass all of their information along to us in the support group. She has suggested that we as a group participate in the "Handprints Across America" gallery proposed by the Pulmonary Fibrosis Foundation. They would like people to post a photo of themselves with a poster of Rare Disease Day. Susan asked if we as a group wished to have a photo taken of ourselves with the poster at the next week's meeting and post it as a group of people with rare diseases.
We are certainly a rare group!
2 comments:
Thank you for sharing your touching story in honor of Rare Disease Day. My son Gage passed away from a rare genetic disease called early-onset LAL deficiency (also known as Wolman disease) in 2009. It is so important to be an advocate and speak up for our loved ones. My hope is that someday other families will not have to go through what we did, which is why I founded LALSolace -- a support group for people and families affected by LAL deficiency. I wish your family well! Mary http://www.lalsolace.org
Mary, please accept my condolences for the loss of your son. Thank you for your comments.
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