Whether it’s discussing the latest developments in research, trading parenting tips, offering moral support, recommending special needs equipment, or sharing experiences with medications, the AHCF utilizes all forms of communication to keep families engaged.Perhaps you have received our monthly email newsletter that gives an incredible snapshot of the latest happenings in the world of AHC. Or, you may be following us on Facebook and Twitter to share stories of your AHC child, or to get the latest news as it’s happening. We hope you have joined us at our signature event, The AHC Family Meeting, as it is the leading AHC focused event, where researchers and families from all over the world come together to discuss everything AHC. Join us in the discussions and become a part of our Community if you haven’t already.
Discover Family Meetings already held and the one currently being planned here. AHC 365 is our foundations blog to connect, engage and support the AHC community. Honorariums are a way to discover the stories of specific AHC children and their families. Honorariums also give a personal dimension to fund raising. Find our latest newsletter, Insider’s Edge, and an archive of past editions here. Facebook The AHCF shares announcements, pictures, updates on our children, just about everything on our Facebook page. Visit our page and engage in the conversation. Oh, and be sure to “Like” us! Facebook Support Group AHCF hosts an AHC support group on Facebook for Parents of AHC children to share your experiences, frustrations, fears and joys with other families. It is also a place where you can ask any question to parents who know what you are going through. Twitter is another online social networking service that enables users to send and read short 140 character messages called “tweets”. Follow us @AHCkids on Twitter for quick news about AHC! YouTube is a video sharing website and is an invaluable resource for the AHC community as it continues to grow. Search AHCPresident to see our Mission and Donor videos, which are great for use at your events and fundraisers, or see videos of our AHC children, as well as interviews with AHC parents. Rare Connect is a joint collaboration between EURORDIS and NORD (the US National Organization for Rare Disorders). Rare Connect is an online social network for patients and families to connect with each other, to offer support and to share vital experiences on aspects of living with a rare disease. Global Genes Project is one of the leading rare and genetic disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. What began as a grassroots movement in 2009 with a few rare disease parent advocates and foundations has grown to over 500 global organizations. The AHC community is always growing. Find our partners through the AHC International Alliance (AHCIA) @ahcia.org.
Check out the links below to stay connected and in the know!