I never get tired of hearing or re-telling this story ==>> Jack Klugman, Henry Waxman, and Orrin Hatch
Posts tagged Rare Disease Day
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stop making publicizing your disease your end goal. You and the other 350 or 3,000 or 25,000 or 199,999 people with the disease will hardly be heard above the shouts of those advocating for funds for cancer, coronary disease, diabetes, HIV/AIDs and other diseases affecting many medically and/or politically.
And in the current system of new drug development, Big Pharma is going to be more interested in developing treatments for gastroenterological disease (heartburn), STDs (avoidable), erectile dysfunction, safer birth control, cancer, heart disease, and obesity.
Your 5,000 sufferers should collaborate with the 350 individuals with another disease and the 199,999 with another and all of the rest of them to be a large and huge advocacy group for encouraging change. Your illness group may not be the first to get attention if changes are made, but somebody will be and as treatments are developed for one rare disease they might also be applicable to other related rare diseases.
This is clearly a situation in whch cooperating with those with other rare diseases will ultimately yield better results for all than screaming ME FIRST on the Internet in social media.
The existing laws and administrative rules probably do not go far enough in encouraging drug companies to develop pharmaceuticals for rare and orphan diseases. Advocate for better incentives and decreased bureaucracy for developing new pharmaceuticals to treat a few thousand. Maybe even the staid Nobel Prize committee will even make an award to somebody who makes a huge research contribution that advances the development of treatments for a rare disease and top research universities will create endowed professorships for high talented physicians and others who study a rare disease.
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There are more than 7,000 rare diseases in the world, almost all of which lack any type of medical treatment. Were every religious congregation in the world to “adopt” a disease and do what it can to help find and provide a cure for that one disease, it is quite possible that the hundreds of millions of people (in aggregate across all rare diseases) could be helped in small and large ways.
I think that it is very possible that organized religions can put away their ideological differences and work cooperatively through information sharing, advocating, raising monies, and demanding progress from governments and corporations to fight rare diseases. After all, most of these diseases are genetic in origin and more than 50% of those who suffer from rare diseases are children. And, central values in the organized religions are showing compassion, helping, and supporting those in need.
I am not naive enough to believe that religions, religious leaders, and religious congregations working together in small ways is enough to solve religious bigotry, the hot points in Jerusalem, or prevent future ethnic-religious cleansing by horrible people deceiving their own citizens. But let’s at least try to start in the small ways of learning about one or two rare diseases and pooling creativity, resources, and prayers for the energy and stamina to find cures. Religious congregations and their energy directed by the desire to help are almost unstoppable forces.
February 28 is Rare Disease Day.
It is also a day when the religious peoples of the world can unite to plan to make small and large steps to acknowledge and cure at least some of the rare diseases.
I pray that it will happen.
And should you not believe in organized religions, I hope you will nonetheless join in an organized search for effective treatments.
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Activities, statistics, and plans to impact policy in the United States. Click on either image for more information.
Rare diseases are often overlooked in the public’s collective mind and the priorities of elected officials, at least in part because many do not know about the diseases and the lack of effective treatment for most.
Spread the knowledge. Click the image for more information.