Rare Patient Voice partners with patient and disease advocacy groups to increase donations. We understand that advocacy groups need to keep the interests of its members at the forefront.
Rare Patient Voice partners with advocacy groups in several ways:
- You can invite patients and caregivers via email, your newsletter, or other means to contact us; if they decide to sign up, they each receive a $5 gift card and your organization receives a donation of $5 per patient.
- Rare Patient Voice can sponsor one of your groups events and invite members to sign up as we exhibit at the event.
- We can do a free online survey of your members and provide you with the analyzed results.
RPV will never ask an organization for members’ names or contact information. Organizations can provide members with our information, so that members can contact us about joining voluntarily only if they are interested. RPV respects the privacy policies of all organizations with which we partner.
We are honored to have worked with many advocacy organizations. Here is a list of those whose events we have sponsored and where we have exhibited:
| Organizations Where We’ve Exhibited |
| Abilities Expos |
| Adams County Aging Conference |
| AIDS Walk Colorado |
| AIDS Walk South Dallas |
| Alliance Center for Independence |
| ALS Association |
| Alzheimer’s Association |
| Alzheimer’s New Jersey |
| American Diabetes Association |
| American Heart Association |
| American Liver Foundation |
| American Lung Association |
| APFED (Eosinophilic Esophagitis) |
| Aplastic Anemia and MDS International Foundation |
| Arthritis Foundation |
| Aurora Health Access |
| Autism Society of Colorado |
| Bmore Healthy Expo |
| Broncos Health Expo |
| Candy’s Place (Cancer Wellness Center) |
| Caregiver Coalition of NE Florida |
| Caribbean Health Summit |
| Casey Cares |
| Celebration of Women Expo |
| Children With Diabetes Friends for Life |
| Children’s Diabetes Foundation |
| Clusterbusters |
| Coalition for Hemophilia B |
| Colorado Chapter of the National Hemophilia Foundation |
| Colorado Sickle Cell Association |
| Crohn’s & Colitis Foundation |
| CURED Foundation (Eosinophilic Esophagitis) |
| Cystic Fibrosis Foundation |
| Diabetes Support Group of Md |
| Down Syndrome Association |
| Epilepsy Awareness Day at Disneyland |
| Epilepsy Foundation of Colorado |
| Epilepsy Foundation of Greater Chicago |
| Eyes Like Mine |
| Fabry Support and Information Group |
| Family Health & Home Expo |
| FAMOHIO (Hemophilia) |
| Fatty Oxidation Disorders Group |
| Fearless Caregiver |
| Hearing Loss Association of America Convention 2016 |
| Huntington’s Disease Society of America |
| Hydrocephalus Association |
| International Waldenstrom’s Macroglobulinemia Foundation |
| Jefferson County Fair (CO) |
| John W. Brick Mental Health Foundation |
| Juvenile Diabetes Research Foundation |
| Learning Disabilities Assocation of America |
| Lennox Gastaut Syndrome Foundation |
| Lone Star Chapter National Hemophilia Foundation |
| Lupus Colorado Foundation |
| Lupus Foundation of America |
| MPS Society |
| Muscular Dystrophy Association |
| Myasthenia Gravis Foundation of America |
| National Alliance on Mental Illness |
| National Ataxia Foundation |
| National Hemophilia Foundation |
| National Kidney Foundation |
| National Minority AIDS Council (NMAC) |
| National Multiple Sclerosis Society |
| National Psoriasis Foundation |
| Nevada Chapter of the National Hemophilia Foundation |
| New England Hemophilia Association |
| NIH Rare Disease Day |
| No Barriers USA |
| OC87 (Mental Illness) |
| Organic Acidemia Association |
| Parkinson’s Foundation |
| Parkinson’s Unity Walk |
| Pedal with Pete (Cerebral Palsy) |
| PKD Foundation (Polcystic Kidney Disease) |
| Prevent Cancer Foundation |
| Pride Community Center of North Central Florida |
| Pulmonary Fibrosis Foundation |
| Pulmonary Hypertension Association 2016 Conference |
| River City Pride |
| Rockers In Recovery (Addiction Recovery) |
| Ryan’s Quest to Fight Duchenne Muscular Dystrophy |
| Salvation Army Womens’ Auxiliary |
| Sarcoma Foundation of America |
| Sickle Cell Community Consortium |
| Sickle Cell Disease Association of America 44th National Convention |
| Spina Bifida Association |
| Surfer’s Healing (Autism) |
| Texas Central Hemophilia Foundation |
| The Center for Development and Disability |
| The Family Cafe |
| United Spinal Cord Association |
| We are R.A.R.E |
| We’re Not Drunk We Have MS |
| Wingmen Foundation |
| Womans Health and Fitness Expo |
| Women’s Living Expo |
| World of Possibilities Expo |
| World Parkinson Coalition |
| Wyoming Governor’s Council on Developmental Disabilities |
And here are advocacy groups that have referred members, for which we reward them with a $5 donation for each referral:
| Partnering Organizations (Donations for Referrals) |
| AIDS Walk South Dallas |
| CareingSeniorService.com |
| Children’s Diabetes Foundation |
| Clay County Salvation Army Women’s Auxiliary |
| Clusterbusters, Inc |
| Eyes Like Mine Inc |
| Fatty Oxidation Disorders Group |
| GCubed Marketing and NWA Senior Resources |
| Huntington’s Disease Society of America – Rocky Mountain Chapter |
| Juvenile Diabetes Research Foundation (JDRF) |
| MS Alliance |
| Muscular Dystrophy Association – Columbus |
| National Hemophilia Association – Colorado Chapter |
| National Psoriasis Foundation SE |
| Organic Acidemia Association |
| Parkinson Association of Central Florida |
| The Independence Center |
| We’re Not Drunk We Have MS |
