The HCU Network of America is not only trying to spread awareness and encourage research for homocystinuria, they were founded to serve as a resource for those currently living with the disease.
Here are some of their services:
- Tips to figure out if your symptoms match HCU
- Informational pages that provide a simplified description of each form of homocystinuria
- How to find a clinic near you
- A resource page specifically for those recently diagnosed
- How to manage your diagnosis and treatment
- Diet tips and food vendors
- Financial resources
- Tips for managing your insurance
- Informational videos
- Fundraising ideas if you’re looking for more ways to be involved
They also highlight up and coming homocystinuria events, fundraisers, and current clinical trials. Additionally, they provide an online place for discussion and collaboration through their Community Forum. PLUS, they have a whole page dedicated to patient stories.
Whether or not you’ve already shared your story here on Patient Worthy, the HCU Network of America is another great outlet! We’re always striving for awareness, and the more platforms the better! Read about children, teenagers, and adults all with your same diagnosis. Learn how they manage everyday life, and who knows? Maybe you’ll make a new friend.
If you’re a patient with homocystinuria, or you have a deep interest in the disease, the HCU Network encourages you to join their Contact Register. As they build their community, they hope to promote knowledge sharing and create a support system for all those affected by the illness.
Plus, the more information they share, the more they’re able to encourage early diagnosis. And we all know the earlier you catch it, the better!