Dear editor:
Rare Disease Day is always the last day in February each year. It is to raise awareness of the public, policymakers, public authorities, industry representatives, researchers, health professionals and any other decision makers for their impact on patients' lives. Even though the campaign started as a European event in 2008, it has progressively become a world phenomenon, with the USA joining in 2009, the year our Skyelah, was born with Muckle Wells Syndrome in February.
Rare and genetic diseases are uncommon to most doctors and represent a large medical challenge. This, and the lack of financial or market incentives to treat or cure rare diseases, is a serious health problem. There are over 7,000 different types of rare diseases disorders. The 30 million people in the U.S. living with rare diseases equals 1 in 10 Americans or 10 percent of the United States. Eighty percent of rare diseases are genetic, 50 percent are children, 30 percent of these children will not live to see their fifth birthday. Rare diseases are responsible for 35 percent of deaths in the first year of life.
This year, the theme is "Patient Voice," recognizing the crucial role patients play in voicing their needs and instigating change that improves their lives and their families. The slogan is "Join us in making the voice of rare diseases heard," reaching the larger audience of those not directly affected by a rare disease to join in making known the impact of these diseases, the people living with rare diseases, and the families often isolated because of these diseases.
Here's how patient and patient advocates can help:
Ensure politicians continuously and increasingly acknowledge rare diseases as a public health policy priority at both national and international levels; increase and improve rare disease research and orphan drug development; achieve equal access to quality treatment and care at local and national levels, as well as earlier and better diagnosis of these diseases; support the development and implementation of national plans and policies for rare diseases; and help reduce isolation felt by people and their families living with rare diseases.
Rare Disease Day amplifies the voice of patients so that it is heard all over the world. The patient voice is stronger when patients receive training so that patient advocates are equipped with skills and information they need to be able to represent the patient voice at the local, national and international levels.
If you would like more information on how you can help, please contact me, Angela Rudd, at 501-545-8066 or [email protected]. We have a very informative Facebook page, "CAPS" Raine-bow (In Honor of Skyelah Raine Truevy Rudd). Here are three active fundraisers, Skyelah's Raine-bow Racers (supports Autoinflammatory Alliance), Skyelah's Raine-bow Racers|Angela Rudd's Fundraiser (supports Global Genes) and https://fundraising.active.com/fundraiser/SkyelahsRaine-bowRacers (supports NORD). Other informative links: rarediseaseday.org and rarediseases.org.
Thank you for any and all support, God bless.
Angela Rudd
Mom to Maverick, Jazzlan, Jillian and Skyelah
Daughter with Muckle Wells Syndrome
Bismarck
Editorial on 02/01/2016