Please view the NEHA Programs below, and contact us if you have any questions.
NEHA is pleased to offer a 4 day camping experience for NEHA families and children ages 6 month to 15 years old. Now in our 21st year, NEHA's Hemophilia Family Camp is held each year at Geneva Point Conference Center in Moultonborough, NH, up on Lake Winnapesaukee. This is a typical camp experience where all campers stay in cabins and eat their meals in a dining hall. During the day, all youth campers are assigned to color groups with a counselor. Each group then rotates through a variety of activities including arts and crafts, woodshop, archery, field games, and visits to the waterfront. Adults are offered a variety of education seesions to attend or they may relax and just enjoy the outdoors. Due to the unique medical condition of the campers, medical staff from the Hemophilia Treatment Centers volunteer to attend camp and provide support to the campers. Classes in self-infusion are taught by experts and the relaxed environment leads to many young people learning to infuse for the first time.
Families pay a nominal registration fee, and all other costs are assumed by NEHA including lodging, all meals, and a complete schedule of program activities led by volunteer counselors. Family Camp is usually held the fourth week of July with registrations opening up in February. Due to heavy interest and limited cabin space, a waiting list usually develops, however close to 95% of those interested are usually able to secure a space at Camp. For a look at the 2012 Camp schedule, click the document below.
Family Camp for 2013 will be held from July 24 to 27, 2013. Pre-Registration is now Open!
The Hole In the Wall Gang Camp
Founded in 1988 by Paul Newman, The Hole in the Wall Gang Camp in Ashford, Connecticut is a nonprofit, residential summer camp and year-round center serving children and their families coping with cancer and other serious illnesses and conditions. Through Camp programs, year-round outreach to hospitals and clinics, and ongoing services for children, families and caregivers, the Camp serves more than 15,000 annually. All of the Camp's services are provided free of charge. NEHA supports the Camp by promoting specific sessions that are created for children with bleeding disorders and other chronic illnesses. We also promote their Hemophilia Family Weekend in the Fall. For more information, please call the Camp at 860-429-3444 or check out their website by clicking HERE. For information on the hemophilia sessions in 2013, both the summer programs as well as the October Weekend program, please click on the informational flyers or applications below.
Women and Bleeding Disorders Retreat-
This is a women-only retreat designed to offer an opportunity to learn more about these often confusing disorders. If funding is available, we try to offer it each year, usually in the summer or fall. Come join us where you will find a relaxed atmosphere with plenty of opportunity to reduce stress, have fun, and increase awareness of the larger support networks that are available to you. This program is free and open to adult women with bleeding disorders (16+). Mothers of a daughter with a bleeding disorder are encouraged to attend with their daughter if she is less than 18 years of age. All hotel rooms and meals are generously sponsored by an educational grant provided by one of our partners.
Registration for our 2013 Retreat will be announced upon determination of the final details. If you have any questions about this year's program, please call the NEHA office at 781-326-7645.
SprinFest is an annual one-day educational workshop containing a variety of topics and focused on meeting the varied needs of the bleeding disorders community. Typically held on a Saturday in April each year, the location rotates around the region. Highlights of the day include a keynote presentation followed by a variety of breakout sessions, and an off-site field trip for the children. An Exhibitors Hall is offered with an opportunity for attendees to visit and learn about products and services offered from a comprehensive list of local and national vendors specific to bleeding disorders. Registration is now open, and guests may either register online by clicking HERE or print out and submit the registration forms below. The event is free for NEHA members, and $10 per non-member. Click below to see this year's SpringFest agenda. New for this year is our Infusion Lab for both children and adults. Use the hardcopy registration form to attend the Infusion labs.
SpringFest for this year is on April 6, 2013 in Portsmouth, New Hampshire.
Fall-Fest is an annual one-day educational workshop and social event which focuses half of the day on education and the other half on a family-oriented social event. Typically held on a Saturday in November each year, the location rotates around the region. Highlights of the day include a primary presentation followed by a variety of breakout sessions. The educational components end after lunch and the group usually leaves the site to attend a social off-site activity. An Exhibitors Hall is also offered with an opportunity for attendees to visit and learn about products and services offered from a comprehensive list of local and national vendors specific to bleeding disorders. Registration usually opens about 2 months in advance. The event is free for NEHA members, and $10 per non-member.
The next Fall-Fest Educational Workshop is scheduled for Saturday, November 2nd; the location will be the Omni Providence Hotel in Providence, RI. Registration will open in the late summer. To view our past Fall-Fest agenda, click below.
Our Holiday Parties are fun and free social events for the entire NEHA community. Usually held on a Sunday afternoon in early December, the event has been held at the Village Club Hall in Needham for many years. In 2012, NEHA moved the event to the Four Points Sheraton in Norwood to take advantage of the beautiful hotel environment. With attendance of about 100-150 people, the party offers a variety of food and non-alcoholic drinks accompanied by tremendous desserts brought by the members. A special program/speaker is arranged for the youngsters, followed by a special visitor from the north pole. All children 1-16 receive a present. There is no cost for attendees, but everyone must register. Registration for our 2013 party will open in early November.
Due to our partnership with the Maine Hemophilia Alliance, NEHA hosts two holiday parties in Maine allowing more people to attend that wouldn't normally drive to Needham, MA. Open to all, attendance is usually between 30 and 50 people and includes good food, desserts, and a visit and present from Santa. Locations can vary, but in 2012 the parties were once again held in Bangor and in Portland. Registration for the Maine Parties also open in early November.
Spanish Language Programming
This activity comprises a group of NEHA members who speak Spanish and prefer to have their education and social activities in their native language. Several stand-alone activities are offered throughout the year, as determined by the group and a special Spanish-track is offered at both SpringFest and Fall-Fest. A committee has been formed by the group to assist in identifying new educational topics and to seek opportunities for the group to get together. NEHA provides partial funding for activities and seeks additional funding from our corporate partners.
Contact NEHA if you would like to be added to the mailing list for future Spanish language activities.
NEHA Educational Partnership Series (NEPS)
This is a new opportunity offered to our corporate partners by NEHA. It was designed to permit our corporate partners to offer their educational programs to NEHA members in a structured format which eliminates conflict of interest and removes the marketing and promotional aspects of a pharmaceutical event. Here's how it works:
A company that has a program it wishes to offer to the bleeding disorders community would apply to NEHA for consideration. If NEHA approves the program, there are certain parameters that would need to be followed. These parameters include handling all logistics of the course and offering it at no cost to consumers. NEHA would manage the promotion and registration process so that no consumer information is released to the company. The company would hire the speakers, find and reserve the location, pay for any food povided, and help with all expenses. NEHA would manage the registration process and provide staff presence at the event to assure compliance with agreed-upon parameters.
NEHA is open to applications throughout the year and will support events that will benefit the bleeding disorders community. Contact the NEHA office for an application or to discuss possible ideas.
This is a joint venture with Inalex Communications, Inc. that brings a variety of education and social topics of interest to our members. Focused on couples that are living with a bleeding disorder in their life, the sessions are usually held on a Saturday in May or October, and an overnight hotel stay is offered to help the couples spend time relaxing and assimilating the subject matter. The event is offered free of charge and is targeted to NEHA members. Inalex Communications provides a wide variety of subjects and speakers for consideration each year and is supported through an Educational Grant provided by Baxter BioScience. The next event has been tentatively scheduled for October 19, 2013 at the Cape Codder Hotel in Hyannis, MA. Registration will open in the mid-summer.
The Couples Network
This is a diverse, cross-generational group of couples that meet throughout the year to share and learn from each other, and is focused on individuals that have a bleeding disorder along with their partners (spouces, boyfriend/girlfriend, fiance, etc.). Initial meetings will focus on building relationships/support amongst the group, with the hope that through conversation the needs of the group will emerge. Locations are rotated so no one always has to drive far. NEHA has agreed to provide limited funds to support future events and to manage mailings. A separate email has been created to allow for direct communications with group leaders: Thecouplesnetwork@gmail.com.
The social support networking aspect is important; to be able to connect with other couples who have shared experiences and understand the reality of loving someone with a bleeding disorder and all that comes with it. Discussions could include aspects of any normal relationship as well as the unique aspects added by one partner having a bleeding disorder. The group hopes to hold activities every two months. Email to the above address if you're interested in getting involved.
NEHA offers a Junior Counselor program each summer during our Family Camp at Geneva Point in Moultonborough, NH. This program is focused on youths 16-17 years of age. Attendees do not need to have a bleeding disorder to attend, but they must have someone in their family who does. Training and mentoring is provided and the youth have opportunities for on-the-job training working with campers during the week as counselors.
NEHA tries to conduct at least one other Teen program during the year and typically offers another program called the Leading Edge, which is funded by a educational grant from Pfizer. This program varies in length and in age and is usually conducted by Pat Torrey, a well-known and respected group facilitator who brings a combination of outdoor education and experiential learning to the activitiy. Focused on youth and young adults between 13 and 24, activities can vary each year. Our most recent Teen Program was held on September 15-16, 2012 at the Browne Learning Center in Durham, NH.
Stay tuned to our website for information about future Leading Edge Yoiuth Programs.
Women's Teas are a purely social activity usually run in someone's living room. This is any small group of women members of NEHA that are willing to organize a social get-together for the purpose of sharing their exeriences with others. It may be organized around a new group of women members that helps introduce them to other long-term members that have much greater experience managing a bleeding disorder in their home. There is typically no set agenda, but just a lively conversation between women living in similar situations.
Anyone willing or interested in hosting a Women's Teas may request limited funding from NEHA to provide refreshments. There are no parameters on this activity, but may be offered by any members of NEHA if they feel there is an opportunity to help others. Typical format is a Sunday afternoon for a few hours at the home of the organizer, but the format is flexible. Promotional assistance and mailings are available through NEHA.
Victory for Women Campaign
We are proud to announce our new womenís health and bleeding disorder initiative --Victory for Women with Blood Disorders, an endeavor that builds upon and expands the former Project Red Flag. With the assistance and expertise of volunteers on our national education/outreach committee, public awareness committee, and the National Hemophilia Foundationís (NHF) Medical and Scientific Advisory Council (MASAC), the Victory for Women with Blood Disorders program will incorporate education, advocacy, and support for women diagnosed with a blood disorder as well as raising awareness among women who have not yet been diagnosed.
For more information, click HERE: