I share this information with you today because my son suffers from one of these Rare Diseases called Angelman Syndorme.
He is a beautiful loving little boy who suffers from multiple delays and seizure disorder.
I want to bring awareness to all disorders that may not receive the funding they need to perform much needed research and support for families!
UPDATE - Visit the following link for at www.rarediseaseday.org for more inspiring blogs!
(Since I couldn't have said it better myself here is an excerpt directly from the website)
Why is Rare Disease Day important?
Rare Disease Day is the perfect occasion to inform or remind people that rare diseases need to be paid special attention to, because:
Rare diseases are life-threatening or chronically debilitating diseases with a low prevalence and a high level of complexity. Patients with very rare diseases and their families are particularly isolated and vulnerable. The life expectancy of rare disease patients is significantly reduced and many have disabilities that become a source of discrimination and reduce or destroy educational, professional or social opportunities.
The rare disease patient is the orphan of health systems, often without diagnosis, without treatment, without research, therefore without reason to hope.
The lack of specific health policies and the scarcity of expertise translate into delayed appropriate diagnosis and difficulty of access to care. The national healthcare services for diagnosis, treatment and care of rare disease patients differ significantly in terms of their availability and quality. European citizens have unequal access to healthcare services and to orphan drugs.
Research on rare diseases is scarce
For more information about what is going on in your area please visit the website at www.rarediseaseday.org
or visit the following social sites:
I recently received a comment on my post about last years Angelman Syndrome National Walk-a-Thon from someone who has a neice that was just diagnosed. Although she and her family have a long road ahead of them it is important for them to know that they are not alone!
A disease or disorder is defined as rare in the USA if it affects fewer than 200,000 Americans at any given time.
It is estimated that there are 6000 to 8000 rare diseases in the world today
Characteristics of rare diseases
- Rare diseases are often chronic, progressive, degenerative, and often life-threatening
- Rare diseases are disabling: the quality of life of patients is often compromised by the lack or loss of autonomy
- High level of pain and suffering for the patient and his/her family
- No existing effective cure
- There are between 6000 and 8000 rare diseases
- 75% of rare disease affect children 30% of rare disease patients die before the age of 5
- 80% of rare diseases have identified genetic origins. Other rare diseases are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
I want everyone to know that they can contact me at anytime with any questions, whether pertaining to Real Estate or the causes I feel strongly about!