There is much to do in order to change the misconceptions about G6PD Deficiency and promote G6PD Deficiency awareness. If you are one of those people whose health was needlessly compromised because your doctor did not have the knowledge to help you and your family, then you know the importance of making this information more readily available to people all over the world. Thanks to modern technology, and social networking sites, it won’t require much of your time. You can even do some of these things while you are out and about.
Joining in the effort helps us to bring this much needed information to G6PD Deficient individuals so they can get the help they need to survive and be healthy. Our goal is to get hospitals all over the world to make newborn testing for G6PD Deficient a part of their regular screening.
The more visitors our website gets the more powerful we will become and the more we can influence those able to make these changes. Below are some suggestions:
Spread the Word
This is an easy one. Simply tell everyone you know about G6PDD and give out our brochure and/or G6PDD Awareness pass-along cards. You can get them here.
Share Your Story
If you have a website or belong to facebook, twitter, or another social network, put a link on your profile and tell everyone about us. The squeaky wheel gets the grease, so speak up!
Sign the Online Petition
Sign the online petition. Once we get enough signatures we will be able to box them up and send them out to government officials and to hospital administrators.
Send Letters (or e-Mails) to Manufacturers
- Every time you find a product that contains contraindicated substances, complain to the manufacturer. Tell them there are 700 million people worldwide that cannot consume these ingredients without harm.
- If you are sending a letter, include some copies of the brochure and some pass along cards.
- Ask them to replace the ingredients with non-legume based products or ingredients that are not on the contraindicated list.
- Tell them you won’t buy their products until they do this and ask them to go to G6PDDeficiency.org for more information.
Contact Government Officials
- Write or call your local government officials and tell your story.
- Ask that they do something about newborn screening.
- Ask them to demand that medical students learn the truth about G6PD Deficiency.
- Send them to G6PDDeficiency.org to learn more.
- If you are sending a letter, include a copy of the brochure and pass along card.
Participate in the g6pddeficiency forum
- Teach them the truth about what has helped you and your family
- Give advice and support to others who are just finding out about this very manageable genetic disorder.
- Submit articles about your experience with G6PDD. If we find that your story will help others, we will include it in a newsletter, blog post or our next book.
Our forum is on Facebook.
Research Articles and Research Papers
- Help us make the information we have as current and correct as possible by finding credible information: Research articles, or blogs or other articles that have been well referenced.
- Use the contact form on the website to email a link to us. Include the link and a brief summary about it, and it will be added to the online research page at g6pddeficiency.org
Check out our new G6PD Deficiency Foundation. This is a non profit charity with 501c3 status.
Want to help us help others?
The other day I was standing in line behind a young lady waiting to check out at the grocery store. I didn’t pay a lot of attention to her while she completed her transaction. When it was my turn to checkout, I reached for my wallet when the clerk told me that I didn’t owe anything. Surprised, I asked her why? She informed me that the young lady in front of me had paid for my groceries. Wow! How nice of her. I asked the clerk to use the money to help someone who needed it.
So…How about paying for someone else’s membership, book, information packet, etc. We will use the money to buy materials for those less fortunate. In some parts of the world it is very difficult for those with G6PDD to get the information they need to get and stay healthy. So, if you can, please chip in a few bucks to help them. All of the money donated will go to get materials to those who can’t afford to buy them and you will feel the wonderful feeling we get when we help those less fortunate than we are. Thank you!