Happy Father’s Day Weekend Patient Worthians!
This week we have an amazing essay written by CMT Warrior Sarah Magno regarding her personal experience overcoming rare disease obstacles. We also have some good news on the tardive dyskinesia front!
The UK is now fighting for access to Orkambi. We have the scoop for you and how you can help. Lastly, we have a personal story about the vulnerability of families battling rare disease.
So sit back and relax, and check out this week’s Editor’s Choice.[one_half]
The cause of tardive dyskinesia in the first place, is shocking.
Thankfully, promising treatment developments are on the rise.[/one_half_last] [one_half]
PW received an amazing essay by a young woman battling CMT. She manages to stay active and has a clear zest for life!
Get inspired here![/one_half_last] [one_half]
CF patients in the US most definitely have heavy financial burdens for their rare treatments. [Insert stereotypical US healthcare comment here]…
But at least we have access to the treatment. What if your government won’t even let you have a treatment that could save your life? Socialized medical care supporter or not, UK CF patients are in a difficult spot. Read more here.[/one_half_last] [one_half]
PW Contributor Denise is a rare mom who is no stranger to the difficulties of caregiving and coping with rare disease.
Read her thoughts on rare disease families here.[/one_half_last] [one_half]
Do you have a rare disease experience of your own? Share with us here.