How can patients and families help raise awareness about rare diseases among the general public?

[dwr0522]

Each rare disease affects only a small number of individuals but collectively we are almost 10% of the population. But there is very little awareness of rare diseases and as a result little support or services.

[Rutiqazuti]

The March of Dimes referred me to a Genetics Specialist. I asked a famous pediatrician who wrote for a parenting magazine in the 1970's, about my genetic disorder. He had the March of Dimes contact me out of New York, USA. They paid for my rare genetic study and after my 11th pregnancy which produced a healthy female child, we went public in Newsweek Magazine about the importance of Genetic Research. Back then most obstetricians chalked miscarriages up to Gods' will. The disorder was also published in several obstetrics journals.

To be heard in public, you have to speak out. Ask questions. Here in US, I'm a disabled nurse/disabled biker. For years it was hard keeping or getting a job. I picked myself up, rode to my State Capitol building and went from one legislators office to another, to teach about my disability and how disabled nurses can still function in non patient care positions. I received multiple job offers after that.

If you want to be taken care of, you have to research at the top of the ladder, not the bottom rung. I bypassed the nursing bureau of licensure straight to my legislators.

The article I wrote was picked up by the California, US, Board of Nursing Magazine and the Ontario, Canada, Registered Nursing Magazine in 2002. Its the same article I wrote for every legislator in Florida, USA. I guess disabled nurses in Canada, had the same problems finding jobs like I did.

If you can't visit, can you write or type letters to every Genetic organization in your Province, Borough, or State? Write a letter in your handwriting, on letterhead stationary, explaining how you need assistance in finding medical professionals to care for your disorder. Every medical university should have a Genetics Dept. Contact a newspaper reporter to write about how unfair it is to not being cared for properly by medical providers because of your genetic disorder.

Hope this information helps.

Rutiqazuti