Our Michigan (US) nonprofit corporation and registered charitable trust, Hailey-Hailey Disease Society, was formed in January of 2006 by the managing sub-group of the HHD Support Group, TalkHHD, a Yahoo Group.
Membership dues ($50.00 annually) and contributions are tax deductible in the United States. We offer a secure, verified PayPal account link to make giving easy, or send your dues and/or gifts directly to us. Information is on every page of our website.
We have an additional small, private website exclusively for our members in order to share HHD Society meeting information: >HHD Society Member Site Link<
>IRS Forms< for 2006 – 2012 are available to view online.
The HHD Society is pleased to offer patients a “Letter to Healthcare Team” that they can fill out with their medications and present to a new doctor’s office or when visiting a new clinic or hospital to help their healthcare team better understand their HHD.
>Letter to Healthcare Team<
April, 2013 we kicked off a new fundraising campaign on CrowdRise.com:
Gimme Some Skin.
Thanks to the efforts of our volunteer Treasurer, we have been listed on GuideStar and were able to start this public campaign to raise awareness and funds for our cause!
His message, which can also be shared from our Facebook page follows:
Hailey-Hailey disease (HHD), also known as chronic benign familial pemphigus, is a genetic disease which causes a defect in the skin cell Calcium pump which in turn causes the skin to blister and fall apart. Have you ever seen the movie “The Incredible Melting Man“? This 1977 American science fiction horror film is about an astronaut whose body begins to melt after he is exposed to Saturn’s radiation. To HHD sufferers sometimes the disease can feel like that.
WE NEED YOUR HELP! At this time the only income that the Hailey-Hailey Disease Society has is through yearly membership to the Society and donations. Please take the opportunity to use your browser and visit:http://www.Crowdrise.com/gimmesomeskin/fundraiser/hhdfoundation Our fundraiser is titled Gimme some Skin. Please donate toward helping us continue our mission of awareness, education and support. Then send this email to other friends and family whom might be able to help. Remember all donations are tax-deductible.
I hope that we can count on your support. Thank you,
Hailey-Hailey Disease Society
B Hiscox, Treasurer
This year’s Annual Meeting of the HHD Society will be held in July (date to be determined) at: Lakeside Motel & Cottages, Harrison, MI The meeting is for currently active HHD Society Members, although the member’s families are welcome to …
The HHD Society Annual Gathering and meeting will be held at Lakeside Motel & Cottages May 21, 2011 at 6:00 PM EDT. All members and friends of the Society and its support groups are welcome to attend the Gathering. Members are …
All HHD Society members, subscribers of TalkHHD, the HHD Vanilla Forum and their families and friends are welcome to attend our yearly HHD GATHERING in June 2010. During the Gathering, the Society takes a little time out to hold its: …
All HHD Society members, subscribers of TalkHHD, the HHD Vanilla Forum and their families and friends are welcome to attend our yearly HHD GATHERING in May 2009. During the Gathering, the Society takes a little time out to hold its: 4th …