We need your help!
CNYBDA is a small group of people who have conducted support/discussion group meetings, provided educational materials in doctors’ offices, educated legislators about insurance issues, and other educational and advocacy projects.
We want to grow. There are about 45,000 people with bleeding disorders in our area. Most do not even know they have a bleeding disorder or are not receiving proper medical care. We want to get the word out to the public, legislators, and healthcare professionals. We want more members so people can learn about how to care for their conditions properly and to get support from each other.
Ways You Can Help
- Inventory. Ask yourself what things you might be able to share. Do you have special talents or hobbies that might be useful for a fundraiser or project? Do you know elected officials, local business owners, etc. who might support our mission?
- Join. Click here to be added to our confidential mailing list. No information about you will be shared with anyone else, and your email address will not be visible to others on the list.
- Attend. We have had support/discussion meetings. Once we have enough members to attend, we can offer more events–educational lectures, social events, etc. We are a founding member of NYS Hemophilia Advocacy Coalition, a consortium of organizations aiming to improve the lives and financial well-being of people with all kinds of bleeding disorders. Bleeding disorder treatment can cost hundreds of thousands of dollars annually. We need you! You can attend seminars, learn about the issues, learn how to talk to legislators, and contact legislators and other decision-makers to ask for their support.
- Publicize. When you’re on our mailing list, you will receive notices of our upcoming events. Share these with other bleeders you know. Print out flyers and educational materials; bring them to your doctor’s office, post them in your library or grocery store, and in your community. Poster-what is a bleeding disorder & about CNYBDA (click here) ~ Set of flyers about women and bleeding disorders (click here)
- Volunteer. There are lots of things we would like to do to grow our organization, but we cannot do them without volunteers. You may have great ideas, talents, or interests you can share! You do not need to have a bleeding disorder to volunteer, just a willingness to help.
- Advocate. We have a small group of advocates in CNY who talk to legislators and decision-makers about important issues. This can be done by mail, email, phone, or visits. Join our confidential email list to get notices about important advocacy topics.
- Shop! When you shop at one of the 700 stores participating in iGive.com (including Ebay) and register CNY Bleeding Disorders Association as your cause, iGive will donate money to us on your behalf. There is no cost to you. iGive often donates $5 for a new member’s first purchase and has contests for larger donations. Registration is free; click here.
- Donate books. If you have a new or gently used book you would like to donate (about Hemophilia, vonWillebrands Disease, coping with chronic illness, or other relevant topics), we will give it free of charge to another family or individual with a bleeding disorder. Contact us with information about your book.
- Donate money. Contact us to inquire how to do that.
