Rare Disease Day...Getting the Word Out!

[Mary Pruitt]

Next week, on February 29 it will be Rare Disease Day! A day to recognize those of us who have been touched by a rare disease. And with LAL Deficiency, we certainly quality for a rare disease! Our Board will be traveling to Washington D.C. for Rare Disease Day events. There will be a day for patient groups at the National Institute of Health and a day at the FDA to discuss what has been going on in terms of research and treatments for rare diseases. I just wanted to share some facts about rare diseases with you: From the Global Genes Project.org "Rare Disease affects over 350 million people worldwide, and the largest percentage are children. There are over 7,000 rare diseases that have been identified all with very unique needs, but many with little to no support. Although each individual disease may only impact a few, together the impact is in the millions. Rare disease is not so rare." Globalgenesproject.org and rarediseaseday.org are great resources for you to find ways to raise awareness in your area. Lalsolace.org is brainstorming ways that we can raise awareness of LAL Deficiency to medical professionals, corporations, and the public throughout the year. Some of our members have asked about a LAL Deficiency walk and we are excited to explore that option. We truly need to get the attention of doctors, scientists and the FDA so that they will see the importance of approving a treatment for LAL Deficiency. We all deserve to live long, happy, healthy lives! So we will be meeting more people next week that can help lead us in the right direction to do these things. I will write about everything we have learned from the NIH and the FDA as soon as I get back. LAL Solace is going to do everything in our power to provide you with the education, resources and support you deserve!