National Organization for Rare Disorders, Inc. (NORD)

10/09/2026

This , learn how multidisciplinary care supports better communication, mobility, engagement, and quality of life for individuals with Rett syndrome: https://bit.ly/4yB2ngI

This free clinician education session from Medlive, in partnership with the International Rett Syndrome Foundation and NORD, offers 0.5 CME credit.

10/08/2026

American Society of Gene & Cell Therapy's Breakthroughs in Cell and Gene Therapy event brings clinicians, translational scientists, manufacturing experts, and regulatory leaders from the FDA together Nov. 12–13 in Nashville and online.

Cell and gene therapy moves quickly, and staying ahead means connecting regularly with experts across the research continuum. Explore the latest in CNS advances, targeted delivery, and manufacturing challenges and successes.

Register before Oct. 13 and save up to 20%: https://bit.ly/asgct-breakthroughs

10/08/2026

Rare disease research takes the spotlight at the 2026 ⚡️

Five researchers among many on view will share their work during Lightning Round Poster Presentations of research advancing rare disease care.

Join us Oct. 26–27 in Washington, D.C., or virtually to hear these researchers present their work: https://bit.ly/4jPFNwe

Featuring representatives from: Merck, Emily Whitehead Foundation, APBD Research Foundation, Howard University College of Medicine and Children's National - Main Hospital, and Parent Project Muscular Dystrophy.

10/07/2026

Meet 2026 NORD Community Champion, Lily Emmanuel!

Lily has been a passionate organizer in NORD’s program, helping grow participation out west in her home state of Colorado. Through her dedication, Lily has forged partnerships with local organizations and brought the rare disease community together to get active while raising awareness and critically-needed funds. Thank you, Lily!

Learn more about the 2026 NORD Rare Impact Awards at rareimpact.org.

10/07/2026

For , explore this free, CME-credited clinician education session on “Partnering with Caregivers: Anticipating and Managing Adverse Effects in Rett Syndrome Treatment.” Watch now: https://bit.ly/4yB2ngI

This session, part three in a series created by Medlive in partnership with the International Rett Syndrome Foundation and NORD, offers 0.5 CME credit.

10/07/2026

The next decade of rare disease will be shaped by the decisions being made today.

At the 2026 NORD Breakthrough Summit, four CEOs at the forefront of rare disease innovation, patient care, and impact will come together for a forward-looking conversation on the opportunities, challenges, and decisions needed to shape what comes next—moderated by CNBC’s Becky Quick.

Featuring:
Alexander Hardy, President and CEO, BioMarin Pharmaceutical Inc.
Renee Gala, President and CEO, Jazz Pharmaceuticals
Tarek Rabah, President and CEO, Otsuka America Pharmaceutical, Inc.
Pamela Gavin, CEO, National Organization for Rare Disorders, Inc. (NORD)

Moderated by Becky Quick, co-anchor of CNBC's Squawk Box and host of CNBC Cures.

Join the conversation October 26–27 in Washington, D.C., or virtually. Register today: https://nordsummit.org

10/07/2026

The 12th Annual Conference of the Society for Mitochondrial Research and Medicine in Bengaluru, India will bring together experts and advocates working to advance understanding and care in mitochondrial diseases.

November 19–21, 2026
Narayana Health City, Bengaluru, India
10:00 AM–5:00 PM

From scientific discovery to clinical care and patient advocacy, the conference will create opportunities for meaningful exchange, collaboration, and new connections.

Join Indousrare and be part of :

Join IndoUSrare at the 12th Annual SMRM Conference in Bengaluru where SMRM, NIMHANS and IndoUSrare collaborate to advance mitochondrial medicine.

10/06/2026

Looking for volunteer opportunities?

Next Generation of Cystinosis are in the work of providing support for adults with through activities, events, and literature centered around life as an adult with cystinosis, collaboration with the wider rare disease community, and updating medical information and lifestyles as we age. Check them out: www.nextgencystinosis.org

They are looking for Board members who bring excellence in finances, former insurance or social worker background, grant writing, proofreading/legal document review, rare community networking, and social media management. Email them today at [email protected] if you're interested!

10/06/2026

No one institution can solve rare disease alone. That's why NORD unites patient advocacy organizations, doctors, industry, and government to advance research and improve access to care, together.

Rare Disease Advisor breaks it all down — our history, our current work, and the programs that make NORD's impact so unique. Read more: https://bit.ly/4yuYfPu

NORD was formed in 1983, following the enactment of the Orphan Drug Act, and is the nation’s leading nonprofit organization focused on rare diseases.

10/06/2026

During September, for Blood Cancer Awareness Month, Lymphoma Coalition encouraged communities to take the No Patient Travels Alone pledge, recognizing the unique challenges of living with lymphoma or CLL and ensuring patients have access to the support and resources they needed.

Searching for support near you, or near somewhere you're heading? Check out the interactive map that tracks their coalition. Click into your continent and country to find an organization that supports lymphoma patients:

Home  /  Member OrganisationMember Organisation Africa Locations EL-AMEL Association Contact Information Tel/fax: 021238237 Mobile: 0553459357 or 0774442411 or 0557723283 | [email protected] Location Centre National Anti-Cancer, Pierre and Marie Curie Place, Algeria Association ADAMS des...