LGDA volunteers truly make a meaningful difference in the lives of those affected by lymphangiomatosis and Gorham’s disease. Each of our programs depends on the efforts of volunteers, so there is no limit to ways in which you can use your skills and talents to help bring hope and help to these families.

The LGD Alliance is always looking for ambitious people willing to give their time and talents to further our goals of giving hope and finding a cure! The LGD Alliance has many opportunities for involvement to best suit your schedule. Listed below are just a few areas where you can put your talents and skills to use to help support the mission and goals of the LGDA. To join our team, or for more information about our volunteer opportunities, please complete the Volunteer Registration Form below and we will happily put you to work making a difference in the lives of the patients and families living with lymphangiomatosis and Gorham’s disease.


Regional Patient Support

Work with our Director of Patient Support to keep in touch with patients and families in a given region, as well as assessing their needs and making necessary referrals to other members of the Patient Support team.


Help promote current fundraising activities; host an event where you live or work; put your creative skills to use developing innovative ways to raise funds to support the LGDA mission.


Use your communication skills to organize or assist with contacting producers of television dramas, talk shows, and other programs that could potentially feature one of these rare conditions; contact local and national media with LGD Alliance updates; guide patients in contacting their own local media to get their own stories published; develop and maintain relationships with policymakers and the local, state, and federal levels.

We also need people to help manage our internet support and awareness activities by creating and maintaining awareness campaigns on our Twitter and Facebook pages and to produce or arrange for production of videos for use on our website and other outlets like YouTube.


Assist in production and distribution of educational materials to patients, medical professionals, and policymakers covering a wide variety of issues; make phone calls and attend meetings and conventions to help raise awareness of these diseases.


Assist in the publication of our newsletter, Channels, and contribute to our News and Blog on our website.

Administrative/Resource Coordination

Put your organizational skills to use helping to maintain mailing lists, donor lists, and generate responses to donors and notification to those in whose name donations are received; coordinate transportation and lodging for professionals attending meetings and conferences hosted by the LGDA. Help maintain our referral lists for medical professionals; moderate the Patient Forum on the website; help locate and maintain relationships with other non-profits and agencies that can help with referrals, social services, transportation, lodging, etc. for the patient community.

Professional Liaison

Help recruit doctors with experience treating patients with lymphangiomatosis and Gorham’s disease to add to our “Doctor’s Around the World” list, assist with a patient registry, write content for our website and newsletter, and create educational materials and provide consultation regarding nutrition. Medical background is preferred.