---
title: 2023 Rare Disease Day Reception
description: On February 27, 2023, the Rare Disease Diversity Coalition (RDDC) held its inaugural Rare Disease Day reception at Longview Gallery in our nation’s capital. The Washington, DC evening was cold and rainy, but that didn’t stop the rare disease community from stepping out and showing its support!
image: https://www.rarediseasediversity.org/hubfs/rddcreception-1.jpg
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# 2023 Rare Disease Day Reception

# 2023 Rare Disease Day Reception

July 10, 2023

On February 27, 2023, the Rare Disease Diversity Coalition (RDDC) held its inaugural Rare Disease Day reception at Longview Gallery in our nation’s capital. The Washington, DC evening was cold and rainy, but that didn’t stop the rare disease community from stepping out and showing its support!

The intimate setting provided the ideal forum for our RDDC Patient and Caregiver Working Group to showcase the recently completed *Report of Survey Findings: Diversity, Equity, and Inclusion (DEI) Efforts in Rare Disease Organizations*. The report highlights the current state of DEI practices and initiatives within the patient advocacy organizations in the rare disease industry. The information analyzed identifies gaps in community engagement and communications, provides recommendations related to outreach and education, and methods to support patients of color with a rare disease.

In addition to showcasing our completed report findings, the RDDC Patient and Caregiver Working Group had a chance to promote its next survey, launched in partnership with the National Organization for Rare Disorders (NORD). This project – the first of its kind – will survey underrepresented rare disease patients and caregivers in an effort to better understand their personal experiences and perspectives within the rare disease community.

RDDC looks forward to hosting more Rare Disease Day receptions and related events in the future, and to share the wonderful projects that our working groups are accomplishing in advocacy of the rare disease community. We want to give a huge thank you to all of the guests and partners who joined us in making our first Rare Disease Day reception a major success.

Get a sneak peak at our event and commentary from attendees about the [RDDC](https://app.frame.io/reviews/022c61bb-ab63-43a0-85f4-84c4ef8aecd9/992e2fab-7f5d-440c-8df4-5a68823abf4d).

###### Tags:

[RDDC Events](https://www.rarediseasediversity.org/blog/tag/rddc-events)

Post by [Rare Disease Diversity Coalition](https://www.rarediseasediversity.org/blog/author/rare-disease-diversity-coalition)   
 July 10, 2023

## Our Partners

[![The Aarskog Foundation](https://www.rarediseasediversity.org/hs-fs/hubfs/The-Aarskog-Foundation.png?width=150&height=80&name=The-Aarskog-Foundation.png) ](https://www.aarskogsyndromefoundation.co.uk)

[![association-of-black-cardiologists](https://www.rarediseasediversity.org/hs-fs/hubfs/association-of-black-cardiologists.png?width=150&height=80&name=association-of-black-cardiologists.png) ](https://abcardio.org)

[![abcuro logo: Click to visit their web site](https://www.rarediseasediversity.org/hs-fs/hubfs/RDDC/abcuro.png?width=150&height=80&name=abcuro.png) ](https://abcuro.com)

[![accessia health logo](https://www.rarediseasediversity.org/hs-fs/hubfs/RDDC/accessia-health.png?width=150&height=80&name=accessia-health.png) ](https://accessiahealth.org)

[![The Akari Foundation](https://www.rarediseasediversity.org/hs-fs/hubfs/The-Akari-Foundation.png?width=150&height=80&name=The-Akari-Foundation.png) ](https://theakarifoundation.org)

[![ALS Association](https://www.rarediseasediversity.org/hs-fs/hubfs/ALS-Association.png?width=150&height=80&name=ALS-Association.png) ](https://www.als.org)

[![Alliance for Black NICU Families](https://www.rarediseasediversity.org/hs-fs/hubfs/Alliance-for-Black-NICU-Families.png?width=150&height=80&name=Alliance-for-Black-NICU-Families.png) ](https://blacknicufamilies.org)

[![amgen](https://www.rarediseasediversity.org/hs-fs/hubfs/amgen.png?width=150&height=80&name=amgen.png) ](https://www.amgen.com)

[![American Kidney Fund](https://www.rarediseasediversity.org/hs-fs/hubfs/americankidney.png?width=150&height=80&name=americankidney.png) ](https://www.kidneyfund.org)

[![American Muslim Health Professionals (AMHP)](https://www.rarediseasediversity.org/hs-fs/hubfs/American-Muslim-Health-Professionals-AMHP.png?width=150&height=80&name=American-Muslim-Health-Professionals-AMHP.png) ](https://amhp.us)

[![Amicus](https://www.rarediseasediversity.org/hs-fs/hubfs/Amicus.png?width=150&height=80&name=Amicus.png) ](https://amicusrx.com)

[![ArgenX](https://www.rarediseasediversity.org/hs-fs/hubfs/ArgenX.png?width=150&height=80&name=ArgenX.png) ](https://www.argenx.com)

[![Association of American Indian Physicians](https://www.rarediseasediversity.org/hs-fs/hubfs/Association-of-American-Indian-Physicians.png?width=150&height=80&name=Association-of-American-Indian-Physicians.png) ](https://www.aaip.org)

[![The Assistance Fund](https://www.rarediseasediversity.org/hs-fs/hubfs/The-Assistance-Fund.png?width=150&height=80&name=The-Assistance-Fund.png) ](https://tafcares.org)

[![Sickle Cell Disease Association of America](https://www.rarediseasediversity.org/hs-fs/hubfs/Sickle-Cell%20Disease-Association-of-America.png?width=150&height=80&name=Sickle-Cell%20Disease-Association-of-America.png) ](https://www.sicklecelldisease.org)

[![Astria Therapeutics](https://www.rarediseasediversity.org/hs-fs/hubfs/Astria-Therapeutics.png?width=150&height=80&name=Astria-Therapeutics.png) ](https://astriatx.com)

[![The Balm in Gilead Inc. ](https://www.rarediseasediversity.org/hs-fs/hubfs/The-Balm-in-Gilead-Inc.png?width=150&height=80&name=The-Balm-in-Gilead-Inc.png) ](https://www.balmingilead.org)

[![bridgebio](https://www.rarediseasediversity.org/hs-fs/hubfs/bridgebio.png?width=150&height=80&name=bridgebio.png) ](https://bridgebio.com)

[![Boehringer Ingelheim](https://www.rarediseasediversity.org/hs-fs/hubfs/Boehringer-Ingelheim.png?width=150&height=80&name=Boehringer-Ingelheim.png) ](https://www.boehringer-ingelheim.com)

[![CACNA1A Foundation](https://www.rarediseasediversity.org/hs-fs/hubfs/CACNA1A-Foundation.png?width=150&height=80&name=CACNA1A-Foundation.png) ](https://www.cacna1a.org)

[![Caring Families](https://www.rarediseasediversity.org/hs-fs/hubfs/Caring-Families.png?width=150&height=80&name=Caring-Families.png) ](https://www.carefamilies.com)

[![Childrens National Hospital](https://www.rarediseasediversity.org/hs-fs/hubfs/Childrens-National-Hospital-2.png?width=150&height=80&name=Childrens-National-Hospital-2.png) ](https://childrensnational.org)

[![American College of CHEST Physicians](https://www.rarediseasediversity.org/hs-fs/hubfs/RDDC/Chest-American-College.png?width=150&height=80&name=Chest-American-College.png) ](https://www.chestnet.org)

[![CombinedBrain](https://www.rarediseasediversity.org/hs-fs/hubfs/CombinedBrain.png?width=150&height=80&name=CombinedBrain.png) ](https://combinedbrain.org)

[![Cincinnati Children's](https://www.rarediseasediversity.org/hs-fs/hubfs/Cincinnati-Childrens.png?width=150&height=80&name=Cincinnati-Childrens.png) ](https://www.cincinnatichildrens.org)

[![Couch Pennies Foundation](https://www.rarediseasediversity.org/hs-fs/hubfs/Couch-Pennies-Foundation.png?width=150&height=80&name=Couch-Pennies-Foundation.png) ](https://www.facebook.com/couchpenniesfoundation)

[![National CMV Foundation](https://www.rarediseasediversity.org/hs-fs/hubfs/National-CMV-Foundation.png?width=150&height=80&name=National-CMV-Foundation.png) ](https://www.nationalcmv.org)

[![Elevate-Advocacy](https://www.rarediseasediversity.org/hs-fs/hubfs/RDDC/Elevate-Advocacy.png?width=150&height=80&name=Elevate-Advocacy.png) ](https://www.elevateadvocacy.com)

[![Entrada Therapeutics](https://www.rarediseasediversity.org/hs-fs/hubfs/Entrada-Therapeutics.png?width=150&height=80&name=Entrada-Therapeutics.png) ](https://www.entradatx.com)

[![Epilepsy Foundation](https://www.rarediseasediversity.org/hs-fs/hubfs/Epilepsy-Foundation.png?width=150&height=80&name=Epilepsy-Foundation.png) ](https://www.epilepsy.com)

[![Expecting Health](https://www.rarediseasediversity.org/hs-fs/hubfs/Expecting-Health.png?width=150&height=80&name=Expecting-Health.png) ](https://www.expectinghealth.org)

[![EveryLife Foundation](https://www.rarediseasediversity.org/hs-fs/hubfs/EveryLife-Foundation.png?width=150&height=80&name=EveryLife-Foundation.png) ](https://everylifefoundation.org)

[![E.WE Foundation](https://www.rarediseasediversity.org/hs-fs/hubfs/E-WE-Foundation.png?width=150&height=80&name=E-WE-Foundation.png) ](https://theewefoundation.org)

[![FSHD Society](https://www.rarediseasediversity.org/hs-fs/hubfs/FSHD-Society.png?width=150&height=80&name=FSHD-Society.png) ](https://www.fshdsociety.org)

[![Prader-Willi-Research](https://www.rarediseasediversity.org/hs-fs/hubfs/RDDC/Prader-Willi-Research.png?width=150&height=80&name=Prader-Willi-Research.png) ](https://www.fpwr.org/)

[![Foundation for Sarcoidosis Research](https://www.rarediseasediversity.org/hs-fs/hubfs/Foundation-for-Sarcoidosis-Research.png?width=150&height=80&name=Foundation-for-Sarcoidosis-Research.png) ](https://www.stopsarcoidosis.org)

[![GeneDx](https://www.rarediseasediversity.org/hubfs/RDDC/GeneDx.svg) ](https://www.genedx.com)

[![GFPD (Global Foundation for Peroxisomal Disorders)](https://www.rarediseasediversity.org/hs-fs/hubfs/GFPD-Global-Foundation-for-Peroxisomal-Disorders.png?width=150&height=80&name=GFPD-Global-Foundation-for-Peroxisomal-Disorders.png) ](https://thegfpd.org)

[![Gillette Childrens](https://www.rarediseasediversity.org/hs-fs/hubfs/Gillette-Childrens.png?width=150&height=80&name=Gillette-Childrens.png) ](https://www.gillettechildrens.org)

[![Glaukos Corporation logo](https://www.rarediseasediversity.org/hs-fs/hubfs/RDDC/Glaukos-Corporation.png?width=150&height=80&name=Glaukos-Corporation.png) ](https://www.glaukos.com)

[![Global Genes](https://www.rarediseasediversity.org/hs-fs/hubfs/Global-Genes.png?width=150&height=80&name=Global-Genes.png) ](https://globalgenes.org)

[![Global Liver Institute](https://www.rarediseasediversity.org/hs-fs/hubfs/Global-Liver-Institute.png?width=150&height=80&name=Global-Liver-Institute.png) ](https://globalliver.org)

[![Glo Preemies](https://www.rarediseasediversity.org/hs-fs/hubfs/Glo-Preemies.png?width=150&height=80&name=Glo-Preemies.png) ](https://www.glopreemies.org)

[![Guthy-Jackson](https://www.rarediseasediversity.org/hs-fs/hubfs/Guthy-Jackson.png?width=150&height=80&name=Guthy-Jackson.png) ](https://guthyjacksonfoundation.org/)

[![Click to view Harrmony Biosciences web site](https://www.rarediseasediversity.org/hs-fs/hubfs/RDDC/Harrmony-Biosciences.png?width=150&height=80&name=Harrmony-Biosciences.png) ](https://www.harmonybiosciences.com)

[![Histiocytosis Association](https://www.rarediseasediversity.org/hs-fs/hubfs/RDDC/Histiocytosis-Association.png?width=150&height=80&name=Histiocytosis-Association.png) ](https://histio.org)

[![Holland & Knight](https://www.rarediseasediversity.org/hs-fs/hubfs/hklaw.png?width=150&height=80&name=hklaw.png) ](https://www.hklaw.com/en)

[![Immune Deficiency Foundation](https://www.rarediseasediversity.org/hs-fs/hubfs/RDDC/Immune-Deficiency-Foundation.png?width=150&height=80&name=Immune-Deficiency-Foundation.png) ](https://primaryimmune.org)

[![indousrare](https://www.rarediseasediversity.org/hs-fs/hubfs/indousrare.png?width=150&height=80&name=indousrare.png) ](https://www.indousrare.org)

[![Click to view ionis web site](https://www.rarediseasediversity.org/hs-fs/hubfs/RDDC/ionis.png?width=150&height=80&name=ionis.png) ](https://ionis.com)

[![The LAM Foudation](https://www.rarediseasediversity.org/hs-fs/hubfs/RDDC/LAM-Foudation.webp?width=150&height=80&name=LAM-Foudation.webp) ](https://www.thelamfoundation.org)

[![LGS Foundation](https://www.rarediseasediversity.org/hs-fs/hubfs/LGS-Foundation.png?width=150&height=80&name=LGS-Foundation.png) ](https://www.lgsfoundation.org)

[![MANA A National Latina Organization](https://www.rarediseasediversity.org/hs-fs/hubfs/MANA-A-National-Latina-Organization.png?width=150&height=80&name=MANA-A-National-Latina-Organization.png) ](https://www.hermana.org)

[![​Melanin Children Matter Logo](https://www.rarediseasediversity.org/hs-fs/hubfs/RDDC/%E2%80%8BMelanin-Children-Matter.png?width=150&height=80&name=%E2%80%8BMelanin-Children-Matter.png) ](https://www.melaninchildrenmatter.org)

[![Mission-Cure](https://www.rarediseasediversity.org/hs-fs/hubfs/Mission-Cure.png?width=150&height=80&name=Mission-Cure.png) ](https://mission-cure.org)

[![Muscular Dystrophy Association](https://www.rarediseasediversity.org/hs-fs/hubfs/Muscular-Dystrophy-Association.png?width=150&height=80&name=Muscular-Dystrophy-Association.png) ](https://www.mda.org)

[![Myasthenia Gravis Foundation of America, Inc](https://www.rarediseasediversity.org/hs-fs/hubfs/RDDC/Myasthenia-Gravis-Foundation.png?width=150&height=80&name=Myasthenia-Gravis-Foundation.png) ](https://myasthenia.org)

[![nac (National Alliance for Caregiving)](https://www.rarediseasediversity.org/hs-fs/hubfs/nac-National-Alliance-for-Caregiving.png?width=150&height=80&name=nac-National-Alliance-for-Caregiving.png) ](https://www.caregiving.org)

[![NBNA (National Black Nurses Association Inc.)](https://www.rarediseasediversity.org/hs-fs/hubfs/NBNA.png?width=150&height=80&name=NBNA.png) ](https://www.nbna.org)

[![National Genetics Education and Family Support ](https://www.rarediseasediversity.org/hs-fs/hubfs/National-Genetics-Education-2.png?width=150&height=80&name=National-Genetics-Education-2.png) ](https://nationalfamilycenter.org)

[![NHMA (National Hispanic Medical Association)](https://www.rarediseasediversity.org/hs-fs/hubfs/NHMA.png?width=150&height=80&name=NHMA.png) ](https://www.nhmamd.org)

[![National-Bleeding-Disorders](https://www.rarediseasediversity.org/hs-fs/hubfs/National-Bleeding-Disorders.png?width=150&height=80&name=National-Bleeding-Disorders.png) ](https://www.hemophilia.org/who-we-are)

[![National Institute of Health](https://www.rarediseasediversity.org/hs-fs/hubfs/National-Institure-of-Health.png?width=150&height=80&name=National-Institure-of-Health.png) ](https://www.nih.gov)

[![NMA (National Medical Association)](https://www.rarediseasediversity.org/hs-fs/hubfs/NMA.png?width=150&height=80&name=NMA.png) ](https://www.nmanet.org)

[![Nephcure Kidney International](https://www.rarediseasediversity.org/hs-fs/hubfs/Nephcure-Kidney-International.png?width=150&height=80&name=Nephcure-Kidney-International.png) ](https://nephcure.org)

[![NORD (National Organization for Rare Disorders)](https://www.rarediseasediversity.org/hs-fs/hubfs/NORD.png?width=150&height=80&name=NORD.png) ](https://rarediseases.org)

[![Novartis Logo](https://www.rarediseasediversity.org/hs-fs/hubfs/RDDC/Novartis.png?width=150&height=80&name=Novartis.png) ](https://www.novartis.com)

[![PAN (Patient Access Network) Foundation](https://www.rarediseasediversity.org/hs-fs/hubfs/PAN.png?width=150&height=80&name=PAN.png) ](https://www.panfoundation.org)

[![PAF (Patient Advocate Foundation)](https://www.rarediseasediversity.org/hs-fs/hubfs/PAF-Patient-Advocate-Foundation.png?width=150&height=80&name=PAF-Patient-Advocate-Foundation.png) ](https://www.patientadvocate.org)

[![Patients Rising logo](https://www.rarediseasediversity.org/hs-fs/hubfs/Patients-Rising.png?width=150&height=80&name=Patients-Rising.png) ](https://www.patientsrising.org)

[![pcori (Patient centered outcomes research institute)](https://www.rarediseasediversity.org/hs-fs/hubfs/pcori.png?width=150&height=80&name=pcori.png) ](https://www.pcori.org)

[![Prevent Blindness](https://www.rarediseasediversity.org/hs-fs/hubfs/Prevent-Blindness.png?width=150&height=80&name=Prevent-Blindness.png) ](https://preventblindness.org)

[![Rare Rising Logo](https://www.rarediseasediversity.org/hs-fs/hubfs/RDDC/RareRising-2-logo-1.webp?width=150&height=80&name=RareRising-2-logo-1.webp) ](https://rarerising.org)

[![SAPHA](https://www.rarediseasediversity.org/hs-fs/hubfs/SAPHA.png?width=150&height=80&name=SAPHA.png) ](https://www.sapha.org)

[![Scleroderma Research Foundation](https://www.rarediseasediversity.org/hs-fs/hubfs/Scleroderma-Research-Foundation.png?width=150&height=80&name=Scleroderma-Research-Foundation.png) ](https://srfcure.org)

[![Scleroderma United](https://www.rarediseasediversity.org/hs-fs/hubfs/Scleroderma-United.png?width=150&height=80&name=Scleroderma-United.png) ](https://www.sclerounited.us)

[![SCARED (Sickle Cell Reproductive Health Education Directive)](https://www.rarediseasediversity.org/hs-fs/hubfs/SCRED.png?width=150&height=80&name=SCRED.png) ](https://sicklecellred.org)

[![Sickle inspired](https://www.rarediseasediversity.org/hs-fs/hubfs/Sickle-inspired.png?width=150&height=80&name=Sickle-inspired.png) ](https://www.instagram.com/sickle.inspired/?hl=en)

[![Sobi](https://www.rarediseasediversity.org/hs-fs/hubfs/Sobi.png?width=150&height=80&name=Sobi.png) ](https://www.sobi.com/en)

[![Sociedad Hispana de Enfermedades Raras](https://www.rarediseasediversity.org/hs-fs/hubfs/RDDC/Sociedad-Hispana-de-Enfermedades-Raras.png?width=150&height=80&name=Sociedad-Hispana-de-Enfermedades-Raras.png) ](https://www.hispanicsocietyrarediseases.org)

[![Sumaira-Foundation](https://www.rarediseasediversity.org/hs-fs/hubfs/Sumaira-Foundation.png?width=150&height=80&name=Sumaira-Foundation.png) ](https://www.sumairafoundation.org)

[![SynGap Research Fund](https://www.rarediseasediversity.org/hs-fs/hubfs/SynGap-Research-Fund.png?width=150&height=80&name=SynGap-Research-Fund.png) ](https://www.syngapresearchfund.org)

[![the waiting room entertainment](https://www.rarediseasediversity.org/hs-fs/hubfs/RDDC/the-waiting-room-entertainment.png?width=150&height=80&name=the-waiting-room-entertainment.png) ](https://www.linkedin.com/in/thewaitingroomentertainment)

[![Think Genetic Foundation](https://www.rarediseasediversity.org/hs-fs/hubfs/Think-Genetic-Foundation.png?width=150&height=80&name=Think-Genetic-Foundation.png) ](https://thinkgenetic.org)

[![Travere Therapeutics](https://www.rarediseasediversity.org/hs-fs/hubfs/Travere-Therapeutics.png?width=150&height=80&name=Travere-Therapeutics.png) ](https://travere.com)

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