The NPKUA is committed to building a national awareness. We encourage local organizations, volunteers, and donors to come together to coordinate walks, runs, golf tournaments, picnics and camps to spread PKU awareness and raise funds for research because these events benefit you personally.
It is these types of local events that have funded the academic research that has led to the commercial development of more treatment options for PKU – including Kuvan, PEG-PAL and GMP. These advancements exist because adults and families came together on the local level to fund the work so these innovations could be picked up by industry leaders.
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This year Rare Disease Day will take place on Monday, February 29th. The theme is 'Patient Voice', recognizing the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and caregivers.This
How can you get involved in raising awareness?
- Post on the NPKUA Facebook page or other social media outlets using the Rare Disease Day logo or #.
- Donate or can become a member of the NPKUA or a rare disease organization.
- Share your personal story on blogs and forums like on the AdultswithPKU.org website.
- Plan ahead and host an event in your community and get your local media involved.
- Attend a State House Event. Click here for a listing of planned events.
For more ideas visit www.rarediseaseday.us.