Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) Family Alliance Disease Support Organization Last Updated: Jul 7, 2020 10:18:39 am Brochure Established: 2004 Area Served: International Families, Friends, Physicians, & Researchers working together to improve diagnosis, treatment, & quality of life for people affected by HLRCC and Fumarase Deficiency Website: http://www.hlrccinfo.org Diseases Supported Collecting Duct Carcinoma • Fumaric Aciduria • Leiomyomatosis and renal cell cancer, hereditary • Paragangliomas 1 • Pheochromocytoma • Renal cell carcinoma papillary II • Reed's Syndrome • Cutaneous piloleiomyomatosis • Show All 9Show Less c/o VHL Family Alliance 1208 VFW Parkway // Suite 303 Boston, Massachusetts 02132-4344 United States (800) 767-4845 ext:3(617) 277-5667 ext. 3 firstname.lastname@example.org 1 address 3 contacts Show All Connect: Staff Speaks: English Telephone Translation: No (Translation services available for other languages) Our Organization Unincoporated Nonprofit International Organization Not 501(c)3 Professional/Medical Board Board of Directors Paid Staff Our Financials N/A Funding for Services $5,000 Annual Budget N/A Funding for Research Funding Sources: N/A This organization receives funding from a company that produces a test or treatment for the condition it serves: No If yes, % of funding from such companies? Our Membership 520 Membership Size 1 # of Chapters 520 Total Number on Mailing List 520 People with Conditions in Your Mailing List What We Do Support & Peer Matching Referrals to Matching Individuals/Families Peer Support Peer-to-peer Counseling Referrals to Local Chapter or Group Patient Navigators Translation Services Therapy & Counseling Professional Counseling Crisis Intervention Grief Counseling Medical Referrals Medical Care Clinical or Treatment Centers Rehabilitation Services Respite Care Genetic Testing Genetic Counseling Legal Advice Workplace Issues Malpractice Help with Adoption or Placement Financial Assistance Medical Care Transportation Assistive devices Insurance Scholarships Home Modifications Research Referrals to Research Studies Registry of affected individuals Blood and Tissue Sample Storage Education & Training Telephone Helpline E-mail List Training Speakers Bureau Advocacy Training Other Pen pal Program Summer Camp Resources Disease resources include educational and informational materials that can be tagged to appear on specific disease pages. HLRCC Community Added On: Jul 7, 2020 Category: General Language(s): English Disease(s): Collecting Duct Carcinoma • Fumaric Aciduria • Leiomyomatosis and renal cell cancer, hereditary • Paragangliomas 1 • Pheochromocytoma Peer to Peer Moderated Community RareConnect Community Added On: Apr 17, 2013 Category: General Disease(s): Collecting Duct Carcinoma • Leiomyomatosis and renal cell cancer, hereditary • Leiomyoma, uterine*del Connecting Rare Disease Patients Globally with Language Translation Facility Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) web site Added On: Nov 9, 2012 Category: General Disease(s): Collecting Duct Carcinoma • Leiomyomatosis and renal cell cancer, hereditary • Leiomyoma, uterine*del Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) web site Showing 3 of 3 resources. Show All Show Less This entry will be permanently deleted. Are you sure you want to continue? Are you sure you want to change the status of this editor?