Would you like to help Genetic Alliance UK improve access to medicines for people with a rare disease? Genetic Alliance UK would like to hear from you if you have any experience of struggling with getting access to medicine through the NHS.
Your experience will help them present a strong case to NICE, NHS England and the Government the need to improve access to medicines for people with a rare disease. Please share your story and help Genetic Alliance UK raise awareness of your struggle with accessing medicine.
You can share your experience below.
I have 3 sons who have just been diagnosed with ALD
I hate to ask but i need to know…how long after the disease sets in do male children have before they lose the battle with this disease?