NERGG would like to encourage people dealing with rare disorders to find others on the same journey and share insights with them. Even before there is any approved medical treatment, affected families working together figure out ways to cope. It helps just to understand how this disease works, so that you can protect yourself from the worst consequence. Often early diagnosis itself is a huge improvement —
- find issues early when they are more likely to be treated successfully
- find a physician or medical center with knowledge about this syndrome
- obtain the optimal treatment
Families sharing this information tend to do much better. It may not be a cure, but it certainly is an improvement!
And families can work together to pool their information and insights, inform the doctors who are studying the condition, and hopefully move the research forward at a faster pace. When there are drugs ready to be tested, this group of people distributes this information to interested persons who then may choose to enroll in clinical trials.
It's a win-win for the families as well as the research community and drug manufacturers!
What if I can't afford to go to a meeting?
Because most genetic conditions are rare, the meetings are not likely to be in your home town! NERGG has a special fund, named in honor of A. Merrill Henderson, a former NERGG executive and retired genetic counselor who is still active in NERGG today.
If you would like to apply for a scholarship to help you attend a meeting about your condition, please send a letter of inquiry to firstname.lastname@example.org. Tell us who is affected, why you would like to go, and what you hope to gain from attending. Outline the full cost of going to the meeting, and how much support you yourself can provide. Be sure to include any other assistance you will be receiving to help you attend, and the amount you are requesting from NERGG.
We look forward to working with you to empower yourself and others.