I LOVE SOMEONE WHO IS RARE
Tomorrow is Rare Disease Day. The main objective of this day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
As you know our Jack has an extremely rare disease called MPS II or Hunter Syndrome so we would love it if you would show your support by sharing this post or making this your profile picture for the day.
Here are a few statistics and facts to illustrate the extensiveness of the rare disease problem worldwide.
- There are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day
- 30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population
- Rare disease impact more people than aids and cancer combined.
- In the United States, a condition is considered “rare” it affects fewer than 200,000 persons combined in a particular rare disease group.
- Approximately 50% of the people affected by rare diseases are children
- 30% of children with rare disease will not live to see their 5th birthday
The political momentum resulting from Rare Disease Day also serves advocacy purposes. It has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.
If you can believe it in Canada right now, only 60% of treatments for rare disorders make it into this country and most get approved up to six years later than in the USA and Europe. People with rare disorders in Canada are missing out on treatments that could save or significantly improve their lives. This needs to change!
The solution is for Canada to create an Orphan Drug Regulatory Framework. The United States and most countries in Europe have already created one, but Canada is lagging behind. The Canadian framework will allow drug companies to apply to bring their treatments to Canada at the same time as the USA and Europe. It will also create an opportunity for Canadians to participate in clinical trials at the same time as they happen in the rest of the world.
As always thank you for your support.
The Higginson Family