Join the Cause
Just by learning about Histiocytic Disorders and Rare Diseases, you are helping us increase awareness. Being informed is the best first step you can take.You can do so by visiting our "About JXG" section or by visiting the following websites:
Histiocytosis Association of America - Disease Info
Rare Disease Day Organization - Info
PowerPoint Presentation on rare Disease by the HAA
Help us spread the word
A simple email to your family and friends telling them why you care about this issue can be a great impact. People pay more attention when they know who is the person making the request to join the cause and the reason. Two or three sentences will do it. You can also write about the cause in blogs or message boards or add a footer to your email expressing your support to the fight against Histio. You can also help us to pass on educational videos about Histiocytosis via email, Facebook or Twitter.
Heroes Among Us
Donate Now
No amount of money is too small, every dollar counts! Here are a list of places where your contribution will go a long way. Make a donation in honor or memory of your Histio Champ today.
The Histio CURE Foundation
Histiocytosis Association Of America - Donation Section
Support Rare Disease Petitions
Sign petitions that will benefit kids suffering a rare disease and histiocytic disorders. You can access these petitions by visiting this website periodically or by joining other Histio or Rare Disease organizations. Note that most of the time you do not need to be a resident of the country where the petition is sponsored. Remember to pass this info along to your friends by forwarding them the petition or by posting it on your Facebook or Twitter accounts.
Petition For Rare Diseases sponsored by FEDER (Spain)
Support Nino's Act
NINO'S ACT (Senate Bill #406) has the potential to help thousands of children and families affected by a rare disease. The Legislation ensures that successful treatments for rare diseases received through studies at NIH are covered under Medicaid if the child’s insurance carrier does not recognize the off label treatment.
Write a letter to the Editor
Writing a letter to the editor of your local or city paper can be an effective way to advocate your cause. Many people in the community read these letters, including community leaders and lawmakers. Don't Give Up, many publications often receive more letters to the editor than they can possibly print. Typically the larger the paper the more letters it will receive. If your letter is not published keep trying! Even the unpublished letters are read by the editors and your letter might inspire them to cover the topic as a news story. For a sample letter use the following link and click PressKit: PressKit for Rare Disease by NORD
Contact your Government Representatives
Personal stories make an impact and truly achieve results. If you are reading this page it is because you care about someone that is affected by a Rare Disease and you have something to say about it. Express your support or disapproval of the current legislation and ask for your senator to do the same. Follow this link to access the contact information of your senate representative: Your Congress. Your health Page
If you need a sample letter please follow these two links:
Governor's letter prepared by NORD
Advocacy letter by Uplifting Athletes
Attend a Histio Event
Join other Histio families in the quest for a cure! There are many wonderful events held throughout the country that help us stay connected and raise money for the cause. Please check our "News and Events" section for events nearby you.
Enroll your child in a JXG Registry
Due to the misdiagnoses, infrequency and rareness of JXG, creating a pool of patients is always a challenge . Help doctors and researchers to understand more about JXG, its causes and possible treatments by enrolling your kid in a registry. For more details, please visit the "News and Events" section of the blog.
Become a volunteer
Consider donating your time and talents to help our fight against Histiocytosis. Together we can do more! For more information, please visit:
Volunteer Opportunities at HAA
