What makes the disease rare?
A disease is considered rare when it affects a small percentage of the population. In Europe a disease is considered rare if it affects fewer than 1:2000 persons and in the US fewer than 200,000 persons at any given time.
What should I know if I am a newly diagnosed patient?
You are not alone. NAF is committed to standing with you. Get all the information you can from your primary physician and find out what are your options going forward.
How can I connect with other families whose children have a similar rare disease?
NAF is establishing a registry of children with rare disease and seeks permission from parents or guardians of these children to connect with others in a similar situation. NAF may act as an interface between or connecting such persons.
Where can I find resources for financial support?
NAF will help patients obtain life-saving or life-sustaining medications and treatments they could not otherwise afford, through its fundraising drive and donor support.
There are other organizations that parents and guardians of children with rare disease may contact for possible assistance and these include:
Trinidad and Tobago Children’s Life Fund – http://www.childrenslifefund.org.tt/